radiohfan23

Thiamine Hydrochloride I take one (1/2 dose) every morning. I feel it gives me something I've been missing. I notice my energy and recovery is improved as my exercise tolerance is much better.

Been there myself. 41 male. Condition started in my late 20s, got rough, bed bound, immobile, etc. But I am vastly improved now. Here's what I've learned. Don't forget the basics: - Consistent fresh air, and getting sun on her face is much more powerful than you'd believe. The body is not meant to be sedentary. Think of these things as nutrients. The more time outdoors (start slow if necessary, but don't give up, it'll likely be an uncomfortable stress at first - this can also be a nice bonding experience, evenings are a nice gentle time to get some air) - Try and look further than the size of a room. Seems strange, but looking at far away objects (outdoors) causes a reset of sorts and eases the stress on the nervous system from all the screens. She's likely frustrated at being subjected to the same narrow view everyday. - grass on bare feet may help, not sure, but worth a shot. Exercise: - Never to strain or discomfort, but stretching, moving, I found for myself, is vital (I started with a little pedal bike in bed, then moved up to a recumbent bike - Stretching will help circulation. I found elevating my legs will freshen the stagnant blood flow (I would do this every day for a bit - it would trigger urge to urinate, this is good, meant I was filtering stale blood). - I found walking is ideal Supplementation/Meds. (Names are linked to the ones I use) *Of course, adding exercise (stress) is not good if your wife doesn't have the constitution to endure it. Remember, exercise recovery is when one adds strength, she must have the ability to recover and for that I've found some supplements that have allowed me to do this. - I do not take any meds. For me, what I've taken only added symptoms. Once I shifted my thinking to giving my body what it needs for me to push myself (through exercise) into recovery rather than attempting to "fix" or alleviate symptoms, I found what I needed to make massive improvements. I've gone from bed ridden to walking a mile plus at fast pace daily and I lift weights now, too. I am almost completely self reliant and live a near normal life. - This is my favorite. Sold on amazon. Only discovered it recently, but I find it gives me something I was most definitely missing. Have improved a lot in the few months I've started it. 5HTP - Serotonin booster and importantly, a nice natural antihistamine. I take a modest dosage every night and balance it out with: Get one with b6 to aid absorption. I take this one. (only one capsule) L-Tyrosine - Dopamine booster. Again, only take a modest amount, but it helps with motivation/drive/energy in a natural way. Vitamin C/Quercetin. - I take this most nights and it helps keep me regular while holding my allergies in check. Morning Smoothie I mentioned allergies. I believe histamine to be a major component/cause of POTS for me. It causes major inflammation. Look up DAO, it's an enzyme that some lack, which breaks down excess histamine. Look into histamine intolerance and dietary ideas. For me eating apples helps a lot, too. - I sprout peas (in the dark) and add them to my morning pea protein/blueberry/kale smoothie. Pea sprouts, sprouted in the dark produce DAO and using it improves my allergies dramatically. Auto sprouters are nice, Mine was like $20. (Just change the water daily) - I throw a small handful of pea sprouts (get the ones meant for sprouting) into each smoothie. A full batch is ready in a few days and lasts a few weeks in the fridge. A good snack as well to help if she's feeling inflammation (she'll know the feeling). My heart goes out to you, this condition is difficult to understand when you're not in it. And it puts a massive stress on our loved ones. If I think of anything else I'll add it. And feel free to reach out if you need me. Joe

Hey! I'd avoid fish, meat, dairy leftovers for sure. But honestly, adding some Vit C, the 5HTP/ L Tyrosine and especially the pea sprouts (I also use a pea protein powder for breakfast and sometimes at night) has worked well for me. It's not eliminated the problem, but I've got enough daylight to work with now. And it's all cheap and easy to make. Definitely try the pea sprouts over the pill DAO. I don't think the supplements do much, but the sprouts help a lot. And they're just generally good for you. I've focused on doing the simple changes and avoided not getting too bogged down. I run into that problem all the time.

40 minutes is amazing!

So glad to hear from you, Pistol! Keep at it. Every step will pay dividends, I promise. Another thing that has helped me I didn't mention was gardening. I saw that in your profile and can't believe I forgot to include it in my post. I built out a few garden beds last year and it has been wonderful to get out there, get some sun and gentle exercise. Plus the bonus of growing my own has been wonderful. Take care and feel free to reach out any time!

I'm 40 years old, have had dysautonomia since 27. At times I was completely bed bound and unable to get around beyond a short bathroom trip. Today, I am on my feet for 2-3 miles a day. I go for long walks often, can lift weights again and am able to do most things. Here's what worked: I no longer take any pharmaceuticals. I ran through the gambit, Florinef, vasopressors, SSRI's, etc. I also tried all sorts of vitamins/supplements over the years. Interestingly enough, stopping this has aided me as well. I eventually identified histamine intolerance as a major issue. As I adjusted my diet to remove most histamine producing and releasing foods and started feeling much better. I limit high histamine foods and eliminated histamine releasing foods like citrus (which affects me most). My digestion is vastly improved and I generally feel much cleaner inside (if that makes sense), perpetual rashes on my upper arms are now all but gone. Notably, my inexplicable anxiety is dramatically reduced. The other things I've added to my routine that has helped are consuming pea sprouts daily to boost DAO in my system. I sprout them in a cheap little auto sprouter and add them to a smoothie. When sprouting in the dark they produce DAO, the enzyme which breaks down histamine. They're also refreshing as a snack and can help if I feel a bit of histamine build up in my system. Lastly, I take 5HTP at night. 50mg with b6 before bed and another if I wake up during the night (which is most nights). I also take ATP fuel from Research Nutritionals. As I felt a bit better I started walking. Just in the yard at first, close to the house so I could just sit if needed. Little by little I expanded my range and today I can go well over a mile in a single walk at a fast pace, up steep hills. I still have my bad days (mostly when I don't sleep well), but they are fewer and far less severe than before. All of this centered around identifying and dealing with histamine issues. There are so many wonderful people here who have helped me so much over the years. This site is how I confirmed my diagnosis, how I found my first physician. I hope this helps. Joe EDIT: I forgot to include that I take N Acetyl L Cystine. I assume many here already take it, but it has helped a great deal. It's a glutathione aid. Would recommend looking into it.

I have got to say that this sounds an awful lot like me. Totally bed ridden, weak, dizzy, etc etc. I was exercising when pots struck and have tried to keep at it but my body just cant take it anymore and i totally understand what you mean by deconditioning not being the cause. I recently got in touch with a home medical doctor who is wonderful because i can no longer get to the office without lying down the whole way. Things have just deteriorated despite my efforts to exercise. I have a physical therapist come to my house twice a week but i always try too hard and about an hour later i really start to suffer. I would say that movement no matter how small helps. At least in terms of mitigating some suffering. I wanted to chime in because i am currently thinking there is some sort of neurotransmitter issues going on with me. Have you looked into dopamine/norepinphrine relationships at all? I am just getting into this more but symptoms wise an imbalance or synapse deficiency or problem may be at play with me. I never feel relaxed anymore despite being relatively happy and content. So, just wanted to chime in in case this helps and to let u know that i know what you are going thru as so many of us unfortunately do. Take care and i hope u find answers really soon! Joe

Thanks everyone for the info. I just started taking this last night. 1.5mg at bedtime. I slept quite deeply and an hour longer than usual, other than that nothing else thus far in the way of side effects/benefits. I am staying at this dose so I'll check in periodically with my progress.

So I had my second injection and was having some of the same side effects. High BP, headache, more dizziness, etc.expect this time it failed to dissipate and the hang over type feeling continued for a few extra days. The doctor recommended I take two weeks off and restart next week. I may lower the dose but he said that the good thing is that it will sill remain effective for quite some time so I am not really restarting the therapy. WIll keep anyone interested in following in the loop when I can moving forward. Take Care.

Had my first injection today. No allergic reaction or initial side effects. I just sort of feel groggy and weak with a bit of a 'sick' feeling but not serious enough for me to assume it's related to the injection versus just being a lousy day. The only noticeable side effect is high blood pressure. I noticed some chest tightness (nothing alarming) and my bp is up in the 150s over 90s. I do have pretty normal bp most of the time unless I'm standing up when it is a bit low. So I'm gonna take a baby aspirin if it continues to stay so high. So far nothing big to report but will keep everyone posted if anything changes.

Just got approved on my first try also... wasn't expecting it but am thrilled.

FYI, I'm about to start taking Erythropoietin this thursday. I just had some basic blood work done (CBC, hematocrit, etc.) to get a baseline of my current levels and will be tested monthly as I go through the treatment. I'll check in to update how it goes. Basically we're just following the protocol with which Dr. Grubb has had success. I can say that it was quite difficult trying to get the medication as most pharmacys don't carry it and insurance will not cover it. It costs about $180 per injection for the generic type i'll be taking, so it isn't cheap. We ordered just the first dose to make sure I don't experience any side effects before ordering all 10. Here's a bit more about me, so that anyone considering this has a sense of my case to compare as to whether he/she may have a similar response to the EPO, I do not know the cause of my POTS - doctors believe it's autoimmune but no definitive tests to confirm (although, I am in the process of going through Mayo's autoimmune dysautonomia testing profile). I currently am taking only multivitamins and salt loading with the occasional xanax as needed at a low dosage. I've been through the run of all the standard medicines and haven't been able to tolerate them. In terms of severity I'm pretty much bed ridden as I'm constantly very ill and weak. I'll try to keep on top of posting as often as possible so that anyone considering this options can get make a knowledgeable decision given the expenses associated with this option. And feel free to PM me if you'd like, I'm happy to try and help if at all possible. Joe

I should say though that he will do a TTT if necessary but it isn't going to b a full lab work up like at mayo or Cleveland. But he is very knowledgeable and will try different medications appropriate to ur situation.

If u can travel I see a cardiologist in new jersey who is good. Dr Tullo. Go to njfaint.com. Wait shouldnt be terribly long.

Thats interesting because yesterday and today I've been particularly ill.. Worst I've felt in a while actually. I was wondering whether the solar flares may have something to do with it, but hadn't thought about the full moon.