cordila

My boyfriend can always see a crash coming in my face before I feel the effects/symptoms. He said it's like my whole face droops. If I look in the mirror I can see what he's talking about - my eyelids sag and it's like my skin falls away from the bones and I look about 20 years older. Then, when the crash passes, I look totally normal again. I would be really interested to know what causes this.

Angelica: My boyfriend and I both got some sort of stomach bug in October 2008 and we have not been the same since. We've caught every bug that's gone around and have been out for weeks. I am just now recovering from a severe bronchial infection that had me out since New Years Day! 6 weeks! And I'm still not 100%. When my boyfriend finally dragged me into the doctor for a chest xray (no pneumonia) the doctor said it's going around this year. They are seeing more people sick for longer periods of time than any time in his recollection (he's been a doctor for 20+ years!). POTS certainly doesn't help but it has been a particularly brutal flu season this year. My nutritionist is helping me rebuild my immune system with: vitamin D, probiotics (70% of the immune system is in the gut), rest, fluids and rest again. There's not much more you can do. Have you approached your employer about the ability to work remote? Many companies are doing it with great success (check out IBM who has more than 25% of it's workforce remote). There are also studies that show that sickness is the #1 reason companies loose man hours and productivity and studies that show that people who work from home are actually more productive to their employer. See if you can compile some evidence and make a case for working from home. Good luck, Waterbaby

Kits, You're hysterical! And while you say you feel pathetic, you gave so many of us a good laugh and that, my friend, is worth a lot. Here's my little story in the hopes it brings you some cheer as well. I lived in NYC when diagnosed w/POTS. Prior to my diagnosis I was dating a sexy stock broker (SSB), living in a loft in the Meatpacking District and running my own fashion company. Right after I started dating SSB I began getting really symptomatic. I had had episodes all my life but had somehow managed to always brush them off and recuperate relatively quickly. In 2006 that was not the case and the first night I spent at SSB's apartment I spent it on the bathroom floor. Let's just say that SSB had zero tolerance for me and my then-still-undiagnosed-medical-issues and dumped me shortly after returning from an Indian vacation with his ex-girlfriend (clearly he was a winner). I was finally diagnosed but by that time I had gotten so sick that I ended up having to liquidate my fashion company, break my lease on my loft, and move back in with my parents in no-one's-heard-of-Washington. I lived with them for 2 years. TWO YEARS! During that time my social calendar went blank, my ability to leave the house disappeared and I routinely spent whole days in bed. I could hardly imagine living a normal life again and certainly had no illusions about love. But through copious research online, an epiphany about allergies/diet after a nuclear study, an 84 year old doctor out of Cleveland, OH, and the willingness to lest my body r.e.s.t. I was able to recover enough to move out of my parents house and back into a big(ger) city - Seattle. I've been here now since June 2008. But here is the best part... I decided I was only going to rent a furnished, month-to-month apartment because who knew how my body would react to life on my own in a big city with a new big job with a fashion company. I certainly didn't want to be stuck in a lease. I found a fantastic loft (YES LOFT) in a very cool part of Seattle and snatched it up immediately. The landlord agreed to meet me at the loft to hand over the keys. He not only handed me his keys - he gave me his heart. We dated for 6 months before even leaving the house for our first date. He has been so incredibly cool and generous and protective and compassionate - it awes me. He has a capacity for patience that is overwhelming. I told him about my POTS between our first and second date. I should clarify 'told' - I actually forwarded him my complete medical history. Yes, yes I did. I'm sure this violates one hundred dating rules but I blasted the book out of the water when it came to him. He originally wasn't sure he could take on a romantic relationship due to my illness but committed to being my friend. On date two, when I opened the door, he took one look at me and collected me in his arms and has not let me go. We're approaching 9 months together and it's not been without it's hitches. His parents are from the Middle East and have deemed me 'too old and too sick' and therefore not good enough for their (only) son. This has put a tremendous strain on our relationship. We talk about marriage and kids and both of us want a big family and an active life. The reality is that I am 36 and in ill health and we just don't know what the future holds. In the meanwhile, I try and have grace with myself and allow myself rest when I need it. He currently is on the top of a ski slope while I have not managed to make it out of bed (it's 11am on a Saturday). I am slowly getting better in the proverbial two steps forward, one step back fashion. After having a fantastic weekend (including going out to a party!!!!) I was feeling so cocky that I ate a bomb of marshmellows and chocolate and had a massive POTS episode two nights ago and have been in bed since. I apologized to him profusely because I now realize that my 'slips' impact more than just me. I realize that I have a responsibility to him to take care of myself - the best care I possibly can and this can be tricky. Why is it tricky? Because sometimes I just want to be a 'normal' person and I get irritated and mad and upset and then I do something, like push myself when I know I shouldn't or eat sugar bombs because I can and I deal with the fall out, which generally makes me more mad and upset. What I'm learning about relationships and POTS is that you have an obligation to your partner to take the very best care of yourself and that includes being open and honest with what's happening to you. Kits, here's the thing, if you meet someone online I think you should lay it out there. If he's going to stick, he's going to stick. And if he's going to go, he's going to go - and the fact that you have POTS actually has very little to do with that. Living with POTS is just something that some of us live with. Other people live with other things. It's not what defines you and not what makes someone want to (or not want to) be with you. Someone will be able to see that hysterical sense of humor and that winning attitude that says 'I can laugh at myself in spite of all this' and THAT is what makes you extraordinary. I am sending you all my best wishes for your first date! And as far as the outfit is concerned...wear the one that makes you feel the most like you. xx waterbaby

I started with the TTFD for several months before Lonsdale added the Magnesium (as chloride). It's helped a lot with the insomnia. I do have a list of oral vitamins I'm to take as well but with my gastroparesis I have a hard time taking anything with regularity. Those vitamins include: stress B complex, EFAs, CoQ10, multi vitamin. I had been living with my parents for 1.5 years and had my period down from 14 days to 4. Since moving out on my own again and to a big city (with a huge job and a live-in boyfriend) my period has gone back to 14 days (a biproduct of using more cortisol which pulls from progesterone and low progesterone means longer periods). Dr. Lonsdale started me on bioidentical progesterone which i started just a few days ago. The first time I tried hormone replacement therapy it was a disaster. I was only able to stand two days before I took myself off it. That was before I had been on the TTFD. Now, a year later, I'm handling the hormone just fine. It will be a few more weeks before I'll know if it makes any real difference in my period. I'm hopeful though. I can't stress enough that the TTFD and magnesium have been lifesavers but equally important have been my diet restrictions. I stopped eating gluten, dairy, alcohol and caffeine. The results have been very specific: the gluten was causing neurological symptoms (drops in BP, slurred speech, extreme fatigue, 'pass out' type sleep, dark circles under my eyes); the dairy was causing GI symptoms (massive nausea); the alcohol was neurological and the caffeine caused GI trouble, anxiety and panic attacks. Now some of the above symptoms still persist but in a MUCH reduced fashion. I hope I don't come off as preachy or my-way-or-the-highway' as I fully understand that every single person and every single body is different and what helps one may not help another. I've just seen such radical improvement in my life and am so thankful for it that I feel compelled to shout it from the rafters. I still have a long way to go to be 'normal' again but when I look at year-over-year improvement, it's quite marked. It's also wonderful to have a non-medicinal, non-surgical option for healing available. I so hope this helps you as much as it's helped me. Best of luck! Waterbaby

I don't know what constituted her 'extremely bad stuff' but i can tell you that the first night i put on the b-cream I had the worst panic attack of my life. It was horrifying! I called Dr. Lonsdale the next day and he said that I'd experience and exaserbation of episodic symptoms for a while but simply needed to 'hero it through'. I did and for 2 weeks it was a really rough go. But a calendar year later I can tell you that powering it through was the best thing I ever did for myself.

Here you go! http://www.ourkidsasd.com/products/20/1300...CFST7iAodySyrEw

That's SO true! I apply transdermal magnesium to my inner thighs every night as well! I will say again that I tried TTFD in oral tabs (also those that melt under the tongue) and NOTHING made a difference until I applied it to my skin. There is something about this process that turns the vitamin from water soluable to fat soluable. I apply about 40mg per day and when I have a lot going on or feel sick I apply 40mg 2x's a day.

Hi guys - I've been massively helped my B1 (read by Vitamin B1 and Dysautonomia post). I do transdermal (applied to the skin) B1 in the form TTFD. Here's the link: http://www.ourkidsasd.com/products/20/1300...CFRxNagodjS3JEg. I tried many other forms and this was the only one that worked. I would also encourage you to have someone do a test that checks your ability to absorb B1. When i get my values measured it comes back normal. It's only when they do a specific test that measures my ability to take B1 into the cell that it comes back off. Hope this helps.

Here's the link to the transdermal cream I use: http://www.ourkidsasd.com/products/20/1300...CFRxNagodjS3JEg

RQT919 - did you try taking the transdermal B1 or the oral? I tried highly absorbable B1 and it did nothing for me either. It wasn't until I tried B1 in the form of TTFD and applied it directly to my skin that it had any effect. I had to stick with it for several weeks before I noticed a difference, which wasn't easy because it is a stink bomb! I just celebrated 1 year on transdermal B1 and I am happy to report that I continue to improve. Although sometimes I get overeager with my new-found energy and suffer set-backs (like now) my overall report is a marked improvement year-over-year. I now go OUT to dinner, go to parties, go into the office at least 3 days a week and work ALL DAY in the office. And my recent set back is due to the fact that I am creative director for a fashion company and I just did a photoshoot with 15+ kids and put in a rigorous 12 hour day on set! I know what I'm doing is making a difference. Just like Dr. Lonsdale said to me when I started this program a year ago, "It took you a long time to get this bad, baby, it's going to take a long time for you to improve." But improving I certainly am! I'm still looking for non-medicinal fixes for gastroparesis and ways to blunt the adrenalin response (or over reaction). I'm considering hypnotherapy - has anyone tried it? With success?

Medication has NEVER helped me. I can't metabolize it. So I can only implement lifestyle changes and vitamin therapy and that has dramatically changed my life for the better. I follow a rigorous diet (free of gluten, dairy, alcohol, caffeine, minimal fruit and sugar) and apply transdermal B1 every morning and transdermal magnesium every night. The diet and the B1 in particular have allowed me to move out of my parents house and back on my own. It's been a year since I've implemented these changes and the difference is dramatic. I no longer even think to monitor my BP or pulse as it is a non-issue these days. I continue to be plagued by fatigue (if i overexert myself), nausea (same reason) and gastroparesis, which seems to not follow any particular, trackable reasoning. If anyone has any tips for those three areas, I would love to hear from you!

I bloat frequently. It's due to a few things: blood pooling (if I stand too long) or gastroparesis. I seem to deal more with the latter than the former but the result is still the same - looking preggers!

Hey Jump: I have a prescription for both but I'm fairly certain you can get the transdermal B1 online. Here's a link to the exact one I take: http://www.spectrumsupplements.com/en/west...labs/index.html. The transdernal mag I get from Lee Silsby compounding pharmacy and I have to have a prescription for it. Now if you can get it without a prescription I'm not sure. I will tell you that I tried the oral supplements of both vitamins and experienced NO improvement in my symptoms. So somehow the transdermal is the magic key for me. Whoops! Have to go! I have a date! Ask me any other questions you like about my treatments. I'm ready to shout it all from the mountains! XX waterbaby

Hi all! It's been ages since I posted but I wanted to bring everyone up to speed. I have been applying the B1 cream since September 5th, 2007 - a little over 10 months. It has dramatically impacted my dysautonomia such that I was actually able to move out of my parents house and am now living in Seattle where I have a full time job (in an office!!) and have a boyfriend! A little over a year ago my family and I had a discussion about my life as a dependent adult and the possibility of needing to live in a home and now I have a home of my own! The last two weeks have not been without incident. I deal with gastroparesis issues daily, I require the entire weekend to recover and restore for the next week, my new boyfriend has to deal with dinners in instead of dinner out, and my panic attacks have been more frequent and more severe. Yet when the symptoms arrive I really try to give myself grace around them and try not to become angry that my body is betraying me yet again. I remind myself that I have made a quantum leap in what I require of myself and my body every day and it will take a while to get up to speed. I hold fast to my diet (gluten free, dairy free, no alcohol or caffeine, and minimal raw fruits and veggies) and apply the B1 religiously every morning. I also added transdermal magnesium every evening (per Dr. Lonsdale) which helps tremendously with insomnia. I don't know if anyone else is trying this regime but I do hope it will help other DINET members. It is not traditional B1 I am taking but the allithiamine form in transdernal cream. Applying it to the skin makes it a fat-soluble vitamin vs. standard B1 taken orally which is water-soluble. I did try taking the latter form and it did nothing at all for me. Please review the articles by Dr. Derrick Lonsdale on Dysautonomia and Thiamine. He is 84 years old and still sees patients but will not be around forever. I work with him on the phone (as he is in Cleveland) and that has worked just fine. Better than fine! I continue to turn to DINET when my symptoms flare up or when I need to reconnect to others who are living through the battle I wage on a daily basis. I know every body is different and every disease progression responds to different things. It is so rare that we are actually HELPED by something and I love that the pillars of my treatment program (diet and vitamins) are simple, noninvasive, nonmedicinal, and effective (!!). I hope this thread will be helpful to some of you. Reading this forum has kept me company many nights when I did not think I could, or would, make it. My gratitude and support is with each one of you. - Waterbaby

Sometimes hot liquids make my entire esophagus shut down. The whole thing paralyzes and I stop being able to initiate a swallow and my whole stomach freezes which brings about nausea and severe bloating. It's crazy that this, too, is a symptom that more than just I deal with. I frequently feel like my body is so strange there can't possibly be people out there experiencing the same thing.

Hi guys: I just had my hormones checked after 3 months of applying the B1 cream. My thyroid, which previously was very low, is now normal. Progesterone, which was virtually non-existent, is now low-normal. I just wrapped up my period and it was a completely tolerable 4 days (down from 15) with no PMS symptoms. I am doing NOTHING outside of diet control (no gluten, dairy, caffeine, alcohol and minimal sugar and fruit) and B1 cream applied once a day. Things are shaping up quite nicely! And I'm told that it will only get better. I am looking forward to how I'll feel after 6 months!

This dysautonomia has turned me into such a shut-in, worry-wart, shrinking violet, wall-flower. In my former life I went to school in a foreign country, traveled the world and moved to many of the largest metropolitan cities all by myself. I used to be this free-spirit who danced all night and always said yes to any promising and fun adventure. Now? I live with my parents and freak out about any invitation that includes being anywhere other than home. I've become so timid and tender with myself and my surroundings and the more I baby myself, the more I worry that I'll never return to that free-spirit I once was. Does anyone else struggle with loss of confidence in their body that filters over into their mental and emotional life? Any tips? Please help. I miss the old me and I don't know how to get there from here...

Here's the link to Dr. Derrick Lonsdale http://www.prevmedgroup.com/lonsdale.php I'm hoping Laurie will answer your question on brands...

Your post blew me right over, Laurie! You went from disability-prone to well in 2 weeks? That's amazing! I'm now taking 40mg transdermally and 50mg orally. Sounds like I'm well behind your 500mg (I'm assuming you meant mg's and not g's...). I should bump up my dosage and see how things go. Did you have any adverse reactions in the beginning, like your symptoms worsening before getting better? And do you mind if I ask you what symptoms were/are the most expressive in your dysautonomia? PS: Dr. Derrick Lonsdale is all about the B1 angle. He's in Ohio.

Is anyone else trying the transdermal B1? I'd so love to have a partner in crime! It's been almost 2 months of the B1 cream and this is the second month where I had absolutely NO PMS symptoms. On top of that, my period was much less heavy than normal and much shorter. My standard 10 day period was down to 5. Something is most certainly happening and the only thing I can ascribe it to is the B1. I still have vaso-vagal reactions and I still experience gastroparesis (and all that that entails) but my life is slowly and markedly turning around. Is someone out there willing to try the B1 with me? It's making a difference in me...maybe it can make a difference in you, too!

Next time a doctor responds to you like that say 'Your ignorance does not translate as my psychosis.' Get up and walk out. The hard part of growing up is understanding that no one can take the bull by the horns but you. And that lesson is harder when you have a condition like POTS that so many people, who are supposed to have the answers, don't know about and/or acknowledge. Mothers are great champions. The difficult part is learning how to become your own best advocate. This condition is hard enough to deal with without people telling you your crazy/depressed. That, in and of itself, is depressing. It may take you a while to develop a good and supportive health team, but once you've done so, you'll be better served (and most likely pretty proud of yourself!). You go get 'em!

I did have that kind of nausea that wakes you up and you think: in this very moment I'm going to puke!...And then nothing. I used to have nausea all the time. Like carry-barf-bags-everywhere and sleep-with-the-bucket-by-the-bed kind of nausea. The most frustrating and perplexing part is that I would rarely throw up. I would just careen to the very edge, like you speak of, and hover there...waiting. I changed my diet and exluded: gluten, dairy, raw fruit, caffeine and alcohol and the change has been amazing. What used to be a daily occurance of debilitating nausea now generally only happens on the heels of hypoglycemia, severe blood pressure drop and/or dysautonomic panic attack. These episodes happen maybe once a month and are usually provoked by some stimulant or another. Gone are the days of waking up, bolt-like, with that to-the-edge nausea. I have no idea if it will work for you but I swear it has worked wonders for me! Tip: when I did (and do) get nauseated I put an ice pack on my stomach. Somehow the cold chills the nerves into submission.

So I tried the nutritional IV last week. It was a complete bust. They used a flexible needle and for whatever reason I have problems with those. Once the needle started to go in, my veins instantly collapsed around it making it amazingly painful to drive it further in or pull it out. So the pain led to an adrenalin rush. The adrenalin rush led to a vaso-vagal reaction and before I knew it I was laid out flat and the doctors were saying things like 'we're loosing her.' Not exactly what one wants to hear under such circumstances. They stopped the IV and put in 2 full bags of lactic ringers which brought some color back into my face (was white as a sheet aparently) and reestablished a pulse (I guess I lost it there for a minute). All-in-all I'm irritated. I was so hoping the nutritional IV's were the next step in my recovery. What I can't figure out is why the crazy over-reaction? I'm not afraid of needles. I wasn't insanely nervous. How is it I can be fine one moment and completely loose it the next? The good news is, with the continued application of transdermal B1 my wipe-outs do not last as long as before. With all that happened above, I was able to walk to the car within an hour. I was pretty physically achy and feeling weird for the rest of the day but the following day I was back at my job again (working from home). That would NOT have been a possibility before the B1. For an example, after my TTT a year ago I was in bed for 2.5 weeks. Couldn't move. Couldn't wake up. Nothing. So I would say that's a vast improvement. Now if I could only blunt the severity and enormity of the reactions. They seem so disproportionate. Makes me feel like a Drama Queen. So if anyone has any ideas to help blunt adrenalin responses....please share...

Yes. I totally buzz with energy. It almost makes me feel like I'm on coke. I feel a rush, giddy, excitable, nervous, energetic and a little off balance. All I know to do on those days is make sure everything I do is very relaxed, calming and easy. Any additional stress or excitement (even something as little as grocery shopping) sends me over the edge into a panic attack or full-blown symptomatic episode. I do find it helps to focus on my breathing and TRY to meditate and calm myself down. It's the only thing that helps even in the slightest.

Stacey; there seems nothing appropriate to say here. Your post brought tears to my eyes. Not only can I acutely share your pain and fear (I'm 35 with no children or husband and living with my parents) but I can cry for you and know how you feel from the inside out. I know we all try to keep a stiff upper lip for the most part but there are moments, times and situations where being sad or angry, upset or disappointed is what makes us human. This suffering is horrid. It's heartbreaking. It robs us of so many things other people take for granted. I won't say 'tomorrow will be a better day' because we all know it may not be. But it may bring the resolve you do not have today, in this moment. So be sad for what you have lost. It's worthy of your mourning. And my hope for you is that tomorrow will bring renewed strength. For all of us...