cordila

Suzanne, I so get the comparison of 20 min run to trying to be happy if you can do a 3 minute end-of-the-block walk. I have such a hard time wrapping my mind around the state of my body...and for me it's been 3 solid years of POTS symptoms! You'd think I'd get the message. Kits, I also am going to try salt-loading. You know, I've always heard it's good for us but, frankly, haven't felt much different if I do (or don't) salt load. So I left it out of my regime. I think, now that I'm doing more, I'm going to add it back in and see if it makes a difference. (Thank you for the tip and personal story...and congrats for making it through the party! Doesn't that feel great?!)

Gosh it appears I'm not alone! Sort of a bitter/sweet reality. Do you have any tricks to help? Like extra water? Or something else? I find the biggest hurdle is in my mind. I somehow still think I'm OK and can handle it. Or I don't want to be 'sick' so I pretend I feel OK. Either way, the result is still the same: massive wipeout. I'll take any tips/tricks anyone cares to pass along.

I had a long and rough week filled with work and fun but on Saturday morning I started to feel the 'edge' of the envelope, that point where I knew if I did anything more, and I mean ANYTHING, I was going to crash. But my Saturday was just beginning and I still had commitments that took me through the end of the day. When I finally went to bed that night, I slept for 12 hours. Sunday was a wash. I couldn't get out of bed. And Sunday night I slept for another 12 hours. Does anyone else experience this? First, this feeling of knowing when you are at the 'edge'? And second, the crash experienced if you've gone too far?

Kits, Before changing my diet and incorporating vitamins I was bed bound for three years, slept in excess of 14 hours a day (with a bucket by the bed no less), lived with constant nausea and had massive blood pressure drops with racing tach. After a gastroparesis study I became so sick from the nuclear meds that I didn't eat for three days. At the end of those three days (with no fluids as well) I figured my BP would be bottomed out. Instead, it was the exact opposite. So I deduced that I either needed to eat radioactive material every day or it was something I was putting in my mouth. From that day forward I excluded the following from my diet: gluten, dairy, caffeine, alcohol, fruit (which kills me) and sugar. I. feel. fantastic. The diet has bettered my health exponentailly. I no longer suffer from constant nausea (it's down to once every week or so for only a few minutes vs. unending hours), I have energy coming out of my ears, so much so that I was able to start a full time job working from home and my blood pressure and pulse are what I like to call 'sexy'. Completely normal. Stable at 112/72 up from 79/42. Resting pulse is at 72 down from 120. All I changed was my diet. !!! Then I read about a dr. in ohio (derrick lonsdale) who specializes in dysautonomia and treating it through topical B1 vitamin. I was tested and came back deficient in B1. Now I take some oral vitamins as well as the topical application. I've been on the diet for 3 months and the vitamins for 1.5. My life has changed drastically for the better. I am still not what I would call 'normal' and I still suffer from dyautonomic episodes featuring gastroparesis, panic/anxiexty, difficulty regulating pupil dilation, insomnia (alpha/delta interruption), etc but I used to suffer these (and MANY other) symptoms at a level 8-10 on a scale of 1-10 and now my episodes register at about a 4 and are MUCH less frequent and are MUCH shorter in length when I do have an episode. I would encourage you to work with your diet and see what works for you. I've noticed I also function best when I eat 5 small meals throughout the day and eat a balanced ratio of fat-protein-carbs at every meal. Very similar to the diet laid out in The Zone. I hope this is helpful to you. I have found such unexpected and blessed wellness from these simple changes. I take NO meds. None. Only vitamins (topical and oral) and diet changes.

"But there is a theory that serotonin (a neurotransmitter) is involved in the process of transmitting messages for the autonomic nervous sytem so increasing the levels may help the messages get through better." That's so interesting. My doctor actually lists me as "allergic" to SSRI's because I react so severely. They completely maximize my symptoms of nausea, anxiety, panic attacks, difficulty concentrating, loss of equalibrium and a weird sense that I am going to lose consciousness, even when I am lying down. Has anyone heard of this happening?

I'm meant to get a nutritional IV infusion of thiamin as well as other nutrients next week. I'm a little nervous because I generally don't tolerate meds or any sort of stimulant or anthing requiring metabolism. I can react very severely. My doctor knows this and is doing step-up dosage but I'm still nervous. Has anyone had any nutritional IVs?

Michele: Your book sounds fantastic! I'm bilingual (English/German) and went to uni in Germany. When I came back to the states I was so out of sorts, feeling like I had lost access to a different (better) self. I would LOVE to read your book. You mentioned a pdf file. Are you open to sending that out? If not, I will hound my local library to get a copy. I thought I was mad-crazy feeling that way. Sister, with that and POTS I figured I owned a timeshare on Crazy Island... Let me know...either way I can't wait to read it!

I'm getting 40mg through my skin and the cream I use is made of a garlic synthetic called TTFP. Garlic contains a huge amount of disulfides which makes it easer for a molecule to enter a cell. When a garlic bulb is crushed or cut an enzyme within the bulb is activated. This natural phenomenon creates a form of thiamin which passes easily into body cells. The lotion I use contains this garlic derivative (which is probably why it stinks so much!). From what I understand (gastroparesis or not) taking thiamin orally (water soluable) is a subpar was of getting the nutrient. It has to be actively transported into body cells by means of an enzyme in the cell membrane. Its absorption into the body is therefore somewhat limited. But if you take it transdermally (through the skin) a little bit goes a long way because it is much more easily absorbed into the body. Because of its ability to pass through the fatty substances that create a kind of waterproofing of each cell, it is also know as fat-soluable thiamin. Think about old folklore where they used to hang cut garlic around a sick persons neck or rub crushed garlic onto the bottom of a sick persons feet. They must have been onto something!... I'll keep at it and keep reporting how I'm doing. Dr. Lonsdale is reluctant to put a timeframe around when I can expect to feel better but his assistant, off the record, said she usually sees people have marked leaps in wellness around the six month mark. One down, 5 to go...

Here's the link to where I get the allithiamine cream. http://www.prevmedgroup.com/westlake.php When you first being using it, you generate quite a stink (sort of a strong B-vitamin/garlic smell) so apply it when you're not going to be in public for a few hours. Also be careful not to get it on your clothes as they will stink, too. Now, after a month, I don't stink anymore (but I still am careful with getting it on my clothes). You may also suffer a 'healing crisis' or 'paradox' or a worsening of symptoms before you feel better. This is normal and a good sign as it means that your body is responding to the treatment and is attempting to balance your system. If you'd like to read more about the doctor I'm seeing and his thoughts on dysautonomia and B1 deficiency just Google 'Derrick Lonsdale dysautonomia B1' and you'll surface some really interesting medical papers.

I wanted to bring you guys up to date on how the Vitamin B1 treatments are going. My mom and I were talking last night and we both realized that after one month of treatment, the following is occurring: -increased tolerance to temperature (I don't get as cold or hot anymore) -increased energy (significant enough for me to get [and hold] a full-time job working from home) -decreased blowouts (i call my severe abdomen bloating a 'blowout') -increased tolerance to barometric pressure changes (my neighbor who also suffers from dysautonomia has been a wreck during the season changes. I have not had a single incident. No dizziness. No headaches. No fatigue. I feel totally fine during this time!) The best is my PMS symptoms were so completely absent from my period this month that I actually thought something strange was happening and that I had bizarre vaginal bleeding. I was having my period and I didn't even know it! Not all is completely well with my world yet. I still am very easily overstimulated and my gastroparesis is still present a little but all-in-all I have had a marked betterment of symptoms. I'm wondering if this is something others of you should try?... I just rub 1/4 tsp of thiamine cream on my inner thighs every night. That's it. And I am sure it's responsible for bringing about the above changes because I've changed nothing else in my life. If any of you do try it, too, please tell me how it goes. I'll report back in another month or so again.

You poor thing! Nausea used to be my chief dysautonomic complaint as well. Not anymore! I instituted a diet that is free of gluten, dairy, fruit, caffeine, alcohol and sugar (OK, I cheat once in a while with the sugar). This diet has changed my life dramatically. I used to sleep with a bucket by the bed and carry around a barf-bag all day and now nausea is such a rarity. I would encourage you to try the above listed diet. It might help. And it certainly won't harm. Another trick I learned is if I iced my stomach (with an ice pack or even a very cold large rock) it would relieve the nausea entirely or at the very least minimize it. It, too, is worth a try. I hope my tips will be helpful. I know how debilitating constant and severe nausea can be. Best of luck...

Thank you lthomas521 for the link! I will read every inch of her site! The thiamine cream I am taking is, indeed, allithiamine. I have no idea how the deficiency started except that my dysautonomia expresses itself chiefly with severe GI distress. It's possible that is not allowing metabolism to take place. Due to the gastroparesis I also had a near-deather last year with a stomach parasite infection. I feel like if i could just get my stomach moving again, things would change dramatically (wishful thinking?...). I don't know anything about the thiamine transporter you mention but I will certainly look into it as my mom has B1 deficiency, too. Thank you so much for the valuable information! I'll let you guys know how it all goes...

Hi Gena: My nutritionist suggested the same thing about pregnenalone but I have to say I'm a little gun-shy right now. Will you please let me know how you go? WB

hi becca. it's amazing what people choose to say. it's been my experience that people who are positioned to be the most understanding, compassionate and empathetic are sometimes those who make us feel the worst. you must know in your heart what they say has no merit. christianity is expressly NOT based on works and so attendence to church does not a Good Christian make. and to your ssri debacle, stop the truck! i tried several ssri's too with equally horrifying results. what symptoms are you trying to alleviate and is it possible to treat them with other means?

Hi Mary from Brooklyn! I joined after reading your post! I lived in NYC and had an amazing doctor there who was WONDERFUL. He was the one to diagnose me with dysautonomia after having dealt with symptoms for over 30 years. His name is Dr. Brian Boatman and he's with New York Cardiovascular Associates on 7th Avenue (646-660-9999). I also recommend Dr. Lili Yu. She's an acupuncturist and was amazingly helpful. She shares her practice with her husband and they have offices both in New York and Brooklyn. They are both lovely people by my advice is to make sure you see Lili. She's fantastic. Their number is 212-741-6674. I sincerely hope they are able to help you. They were very helpful to me. And very kind and understanding. Good luck!

I will! But listen to this! My mom got tested for B1 deficiency, too. She doesn't have dysautonomia but she has Lupus, Rheumatoid Arthritis and Raynauds. She went to her lupus doc last week and had him test her for B1 deficiency, too. And? She's deficient! So it beggs the question of genetics. The expression of her deficiency is competely different but it's nonetheless very interesting, no? How did you get tested for B12 deficiency? What test did they run? And how do you think that deficiency expresses itself? Can you tell a difference when you get a shot?

I have this weird thing where I'll wake up in the middle of the night sometimes and be ripped out of sleep by a huge cough. It's like this big blast of air that I have to cough out. Immediately when I do I feel like I'm going to vomit. Like in that very second. But I NEVER do. The sensation doesn't last too long, a matter of minutes, but it's acutely uncomfortable and I totally don't understand the cough. I would guess sleep apnea except for the fact that the breath is going out instead of in. Weird, huh? Anyone else?

I have very low progeserone and was put on natural progesterone cream. I immediate became symptomatic and felt horrible. I tried twice. The first time I quite after 4 days and the second time I only lasted 2 days. I don't seem to be able to metabolize much of anything by way of drugs or medicinal assistance for symptoms. My guess is you're much the same.

Doesn't it seem like ALL the dysautonomia symptoms are weird? But outside of the normal 'funk' that we're all afflicted with, I get intermittent additional bazaar symptoms during an episode like: -all over body tremor -yeast rash (inexplicably pops up after an acute episode...always in different places) -severe depression the day after an episode Hey, while we're on the topic of weirdness, does anyone wake up in the middle of the night expelling one huge cough? Like a blast of air? Accompanied with severe nausea where you feel like you're going to vomit that very second?

Has anyone noticed an exacerbation of symptoms after a fall and/or car crash or other jarring physical experience?

Thanks, Amy. I got diagnosed in Aug 2006 after having dysautonomia problems since birth. It took them over 30 years (!!!!) to discover what I had. I'm so thrilled to have found you (DINET). I've read and reread all the postings and they have helped me significantly, both emotionally and physically. So now that I've been on the road for over a year I hope I'll have some things to contribute that might help someone, somewhere feel better. Thanks for the welcome!

I constantly research dysautonomia and what I can do to help myself heal and/or manage this condition. I came across a medical article by Dr. Derrik Lonsdale siting a deficiency of B1 (thiamine) as a precursor to, and continued state of, people with dysautonomia. I had my doctor run a transketolayse test for B1 deficience and sure enough I came back 'severely deficient'. I'm now applying B1 cream once a day (my gastroparesis prevents me from digesting and metabolizing vitamins appropriately) and have been for a month. At the beginning I noticed extreme and severe negative reactions or exacerbation of my symptoms. I was told to expect that from Dr. Lonsdale as my body attempts to balance what is otherwise imbalanced or lacking. The severity of my reactions have minimized significantly but I am still waiting for a feeling of wellness (aren't we all?). Has anyone else experimented with B1 vitamins/cream/IV and/or heard of B1 deficiency with dysautomonia?

I agree with Emily that avoiding gluten is a life changer as far as GI stress/distress is concerned. I also found that avoiding dairy and fruit is helpful. Less than 10 cherries or a bite of pineapple has sent me to the ER with doubling-over abdominal pains. Also on the list of avoiding: alcohol and caffeine. I have a sense that avoiding sugar would be a good thing but I find that to be a challenge. It just tastes so good...