cordila

I've been seeing a new Endo and after 2 years of applying Thiamine cream my B1 levels are still not up where they should be. It's now clear I have a mitochondrial disorder - which we can tell simply by adding up the low B1 levels plus off the charts pyruvic acid levels and an virtually non-existent parasympathetic nervous system (fueled by acetyl-choline) equals mito-heaven (or ****, as it were...). I'm starting on B1 injections next week. We're starting at 50mg's 2x's a week and slowly increasing to 100mgs/day. It may go even higher but that remains to be seen. I found some interesting personal accounts that I though you guys might find interesting too. http://www.mecfscanberra.org.au/docs/stories/bronwyn.htm http://www.lymeinfo.net/thiamin.html

Firewatcher - my mom just got diagnosed with Gullain-Barre Syndrome - it sounds awfully similar to what you have. She has the chronic form so the symptoms are much milder than what you'll find under GBS. It started with numbness in her feet and then spread to weak knees and weak thighs. She now has tingling in her fingers as well. I would say go to a neuro and have them check you for GBS (or the chronic form). Be well! WB

Biz Biz: the symptom of 'forgetting how to swallow' is one I'm very familiar with. When it happens (as it did last night) I say my Swallower is broken. Last night we had a dinner party and somehow the anxiety or excitement for the party translated in a total shut-down of my Swallower. No food in. Not even liquids. I've found that when it gets like that it's best not to push it. Wait until you feel like your body will remember the sensation. I once forced applesauce down my broken Swallower and - well - really bad idea. In regard to the fruit and yogurt, I ditto all the other responses. But if yogurt and fruit is all your body will take then that's what we have to work with. At least you can still eat SOMETHING. When I get really bad I make UltraClear shakes by Metagenics. It's packed with vitamins as well as fat, protein and rice-based carbs. It's easy to digest and gives me nutrients and vitamins while my body works it out. Best of luck! WB

THAT'S SO AMAZING! You won't believe it - I had my cousin pick up some Zyrtec for me today before coming over. We had a day full of meetings (we work together) and I was worried if I was going to make it through the day. I took 1/2 a Zyrtec this morning when he got here and here it is now, some 10 hours later, and I feel great! I have been going strong all day and have not had the profound fatigue, extreme nausea or low blood pressure that has been plaguing my every day for the last 9 days. I woke up just like you, could barely get out of bed (even after sleeping with all the windows shut, changing the bedsheets, and having my boyfriend shower before coming to bed). Today we went out to get lunch and I had no problems at all. Just yesterday, I went to meet my aunt for coffee and had to abort our visit due to low BP and crippling nausea. This is just the coolest! I'm going to keep taking them for a while at least. Wow - so nice to pull out of this horrible crash! (Hey - what's MCAD?...) PS - I didn't have any adrenalin rushes last night either! Now I can't say I'm Sleepless in Seattle anymore

Hey Thankful- I can't wait to take Zyrtec, too. Hopefully w/the same results. The thing about Benedryl, Claritin D, and Zyrtec D is that they all contain ephedrine or pseudoephedrine which stimulates the CNS. That might be why you're so fatigued. If you're just taking regular Zyrtec then it doesn't contain either ingredient. I'm going out tomorrow to purchase some Zyrtec. It's been a hellish 8 days. I've noticed on the posts several of us have had crashes recently - seemingly relatively out of the blue. Maybe the allergy season is taking us for a ride. Pretty easy to test! I'll report after I take Zyrtec tomorrow. Thankful, will you keep reporting how you feel, too?

It's beautiful in the Pacific Northwest. The rain is starting to clear away and there are buds and fresh green grass everywhere you turn. The trouble is, while I do not have typical Spring allergy symptoms (like runny nose, sneezing, sore throat, puffy eyes, etc) I completely loose blood pressure. I've read that histimines lower BP and increase vasodilation and I think that must be true as I have pulled out every trick in the book to up my BP and yet it still hoveres around 70/40 and has for a week! Yuck! I've tried Clarinex and other OTC meds but, due to the CNS stimulation aspect of the main ingredient ephedrine (or psuedoephedrine), I can't tolerate it. I've been taking a spoon full of local honey each day to help increase my resistance to the pollen spores in the area (as I am new to the Pac NW) but so far nothings helped. Does anyone out there have the same issues and/or have you found any good tips? -WB

Radha! So glad you posted this...I was just thinking about it last night as I lay in bed with aching ankles. I don't get itching but I get serious aching when I lay down after blood has been pooling. I notice it mostly at night. My ankles throb! The weird thing is...most of my pooling is in my splanchnic bed. Do yours just itch or do they ache too?

I've been taking 3g supplemental Vit C for about a year now. It's helped me tremendously. I can't say it's helped with vasoconstriction per se as I still have tremendous pooling in my splanchnic bed but I do credit Vit C for a general improvement in health, particularly in my 'bounce-back-ability'. Keep in mind that increased levels of Vit C also require increased water intake (don't you ever feel like we might just float away!). I'd be curious to hear how your test goes. -WB

Hi Tearose: Mr Dr. said it's an excellent way to hydrate and said that many of his ans patients swear by it. I like your homemade brew. I'll have to give that a go as well. -WB

My new endo was preaching the virtues of Pedialyte and I was wondering if anyone drinks Pedialyte daily. How does it work for you?

Hi Earth Mother: Interesting what you say about histamine. I crashed (the worst in a year!) about 5 days ago - just as the buds were coming out on the trees. I don't have traditional 'allergies' but I do notice the back of my throat swells up a little bit and I have some post-nasal drip. Anyway, I've been struggling to keep my BP up the last 5 days (it's been hovering at 70/40) and nothing has helped. I finally took some Claritin but read that, due to epedrine which stimulates the ANS, it's not a good idea for us POTSies. I'm very interested to hear if anyone else bottoms out come Spring time. My crash was the works: extreme nausea, massive body-rocking tremors, low BP and all that goes along with that. I live in the Pacific Northwest. Seattle to be exact. And seem to be having a hard time with the weather - and now with the allergies.

I moved to Seattle in June 2008. I've had a really bad winter with colds and flus and am not sure if it's just my marked increase in activity or the weather. Any other Seattlites who can weigh in? Is it POTS? Or is it the rain?

EarthMother - You use ice packs too?! I thought I was the only one. My dr's can never explain to me why it makes me feel better to ice my stomach when I am really nauseated (although the other day with the tremors it didn't help one bit). I find it to be such a strange thing. The only thing I can think of is that it must numb the nerve impulses or something. Do you have any clue why it feels good? And good tip on the hot pack. I'll do that next time. wb

Hi guys: Just wanted to jump on and say 'hello'. I've been posting like mad-crazy today after a long break. Why? Because I arrogantly stopped taking my B1 cream thinking I had this thing licked! I had taken my first flight in 3 years (successfully) and simply felt like my life had moved beyond my needing the cream. Well, after 2 weeks off the cream my body went cage-fighter on me last night. I got drilled w/massive tremors, horrifying nausea, and a vice-like grip around my gut. Not fun. A full 24 hours later I still have had no fluids or food today. My BP is low and HR high - big surprise. All that to say I believe now more than ever that B1 cream works! Beggiatoa, are you still on the bandwagon? I'd love to hear how things are going for you. Waterbaby

Does anyone else have trouble with Seattle? I moved here a year ago and have had a horrible time with the gloomy and overcast skies, constant rain, and stark changes in barometric pressure. I can't tell if it's just because this I recently increased my stress level (no longer bed-bound - whoot whoot) or if it's Seattle. My boyfriend and I are considering the Bay area as well. Any thoughts on the Emerald City?

The B cream is called Authia cream by Westlake Labs and I buy it on www.ourkidsasd.com - they usually have it on sale. I've been putting it on for 1.5 years now and it's totally helped put me back on my feet. I stopped taking it for 2 weeks (call it arrogance, call it distraction, call it not wanting to stink) and last night I paid the price for it big time. And now it's the day after and I can't eat or drink. I think my stomach is traumatized from 5 hours of shaking and tremendous adrenalin surges and extreme nausea. I take probiotics/acidopholus daily. That is...when I remember. Vowing to be better about that!

Not after taking medication but I just posted a post about tremors a few minutes ago. Shaking must be in the air! I actually get tremors when I DON'T take my medication (which for me is transdermal Thiamine).

Hi guys! I replied to another post about a fine tremor but wanted to reach out to you for help under a separate post. I'm lying in bed after suffering last night through the worst tremors ever. I only get them really badly when I am also very nauseated (which I was last night). I have been under a lot of stress the last two weeks, the barometric pressure dropped a lot yesterday and I couldn't get my BP above 80/43. That was during the day. Suddenly at night I developed full on tremors with horrifying nausea. Aside: my nausea is rarely ever accompanied with vomiting. Does anyone else have this? I'd say the ration is 1,000/1. Anyway, I have been very bad in forgetting to take my B1 cream, which has, for the most part, kept the tremors at bay. During these last 2 weeks I forget to take it and last night I sure paid the price. The problem is...all day today I've been in bed with huge abdominal pain. It sort of feels like someone has it in a vice. It feels gripped. I can't eat any food and this far have not been able to have any water. I popped a ginger ale about an hour ago and have been taking the babiest of sips. I'm not even 1/10th of the way into the can. Does anyone have any tips for both the tremors (when they are in the throws of them) and/or the aftermath. I KNOW I need to drink in order to stay out of the hospital but my tummy just does not want to at all! Help!

Hi guys! I'm so glad to find this post. I'm lying in bed after suffering last night through the worst tremors ever. I only get them really badly when I am also very nauseated (which I was last night). I have been under a lot of stress the last two weeks, the barometric pressure dropped a lot yesterday and I couldn't get my BP above 80/43. That was during the day. Suddenly at night I developed full on tremors with horrifying nausea. Aside: my nausea is rarely ever accompanied with vomiting. Does anyone else have this? I'd say the ration is 1,000/1. Anyway, I have been very bad in forgetting to take my B1 cream, which has, for the most part, kept the tremors at bay. During these last 2 weeks I forget to take it and last night I sure paid the price. The problem is...all day today I've been in bed with huge abdominal pain. It sort of feels like someone has it in a vice. It feels gripped. I can't eat any food and this far have not been able to have any water. I popped a ginger ale about an hour ago and have been taking the babiest of sips. I'm not even 1/10th of the way into the can. Does anyone have any tips for both the tremors (when they are in the throws of them) and/or the aftermath. I KNOW I need to drink in order to stay out of the hospital but my tummy just does not want to at all! Help!

Seems like weight gain has been a recent topic for many of us. I went on Progesterone Cream 3 months ago with disasterous results. I went off it 30 days later. That was 2 months ago. During the time I was on the cream my weight shot up 7-10 pounds literally overnight. It kind of went all over but mostly my breasts, upper arms, bum, and belly. The breasts have gone down a little (they grew 2 cup sizes during that time!) but for the most part the weight keeps sticking. Has anyone else had this experience? Does the weight eventually come off?

Ever since my diagnosis in 2006 I've been fighting to 'be normal again'. Along the way I have encountered amazing healers/doctors and have found huge success with diet (gluten, casein, alcohol, caffeine free; limited sugar; lots of small meals) and vitamin supplements, chiefly B1 and Magnesium creams. Those two things alone took me from bed bound 22 hours a day and living with my parents (in my 30s!!) to living on my own, working full time, moving back to the city, taking on a relationship with an amazing (seriously amazing) man, and feeling more 'normal' than I have in years! And then my ego peep out and <BAM!> In the last few weeks I've been 'forgetting' to apply my B1 cream. Why? It stinks! And after all, I tell myself, I'm 'normal'. Well, after a particularly arguous week (first flight since 2006, week with my parents, mom getting really sick with Guillain-Barre, moving from one home to another, moving IN with my boyfriend) I ended up missing 2 interviews for great jobs (recently laid off !!) and last night I got so schooled by the worst episode in years! It ALL came out - diarrhea, extreme nauses, and the ever-so-sexy tremors (My boyfriend made some crack about putting a quarter in me and getting a vibrating bed!). It's now 11:30am and while the tremors have subsided, my tummy is so sore - like I got kicked in the gut. And the more I think about it..the more I think I did. The kick in the gut is my wake-up call. It says 'be grateful that you've found good doctors, a loving (and understanding) boyfriend, and a path to wellness that doesn't include meds.' This whole time I've been focused on being 'normal' which means not having to take my vitamins or worry about what foods to eat or if it's hot outside or if I'll be overstimulated at a party or blahblahblah. Instead I need to focus on being well - and grateful for the wellness my diet and vitamins affords me. It's a hard transition but one I'm committed to making. I don't want to be here again - so sick that I can't even eek out a 'goodbye' to my boyfriend as he leaves for work. I regret not treating my body with respect. I'm sad my need for 'normal' usurped my need to take care of myself. I learned my lesson...I think. Be well, Waterbaby

I can't do gluten, casein, alcohol, caffeine. Limited sugar. No cherries, pineapple, or turkey. I seem to be OK with chemicals.

OMG green! You made me laugh so hard! I sent your post to my mom. She was with me during a particularly bad hypoglycemic episode where I hammered on the hood of an old ladies car for cutting my mom off while we were walking across an alley. Think 'I'm walking here!' So bad and mortifying to my mom who simply smiled and waved at the lady and said to me (while grabbing me by the elbow) 'We need to get you food. Now!' If it weren't so tragic - some of this stuff would be pretty funny! Thanks again for a great laugh!

It's been a frustrating winter. I moved to Seattle and out of my parents house (YEAH!) in June. By October, the standard Seattle gray sky moved in and my boyfriend and I both got the stomach flu. That was in OCTOBER. Since then, I've had every flu under the sun - stomach flu 3x, horrifying cough from Christmas to mid-February, and now I'm struggling with bouncing back from another 10 day long flu. On one hand, I know this has been a horrible flu season for everyone and except for the 7 week long cough, my boyfriend has gotten every flu right along with me - so I know it's not just me and some sort of ongoing episode. The problem is...I'm exhausted, mentally, physically, and emotionally. A few weeks ago I noticed a funny skin patch on my chest and it looks like skin cancer (my dad has it so I know the look). I'm at the end of my emotional rope. I'm sick of doctors. I'm sick of illness. I try everything under the sun to help myself to feel better - sometimes I win a small victory but most of the time I lose. So I'm sitting here on the couch looking out at another horribly gray day and I'm thinking...do any of us ever really get better? I would be so grateful for any 'success stories'. Anyone?...

I tried all the anti-nausea and anti-emetics and the ONLY thing that helps me is to put an icepack on my stomach - I know - it sounds like the most horrible thing to do but I SWEAR to you it is really the only thing that helps me when I have nausea, and my nausea is very extreme. Other things that have been hugely instrumental at minimizing episodes to begin with: 1. avoid gluten (wheat, oats, barely, rye, and glutenous rice) 2. avoid all dairy (including hidden dairy like casein and calcium casinate)