targs66

Thanks Issie! I've also asked the question (of how to increase DAO) on a mast cell disorder site - will post here if I get an answer.

I have been really interested in increasing vitamin D levels - mine are low and since moving to the UK from the States my health has just gotten worse and worse (I'm in northwest England - the sun, when it's out, is not very strong). I did a bit of online digging to see about the benefits of tanning beds a while ago - here's from the notes I took: "UVA and UVB light rays are both emitted by the sun and tanning beds but UVB rays are responsible for vit. D synthesis. Tanning beds are calibrated to provide UVA rays to maximize tanning effects (UVB rays cause sunburn more than UVA rays)." I didn't write down the source, but I recall some supporting sites that said that you won't get vitamin D in any significant amount from tanning beds, but I wasn't sure why until I found the information above. I'd be interested to see if others have found conflicting info...

Glad you're feeling better on the POTS front, Issie! I hope the allergies improve soon too. Thanks for posting these links. I was digging around the internet on this topic and came across a product that claims to "increase DAO enzymes." In addition to Vitamin C and calcium, it contains "Diamine Oxidase Enzyme (as porcine kidney protein concentrate pellets) at 4000 HDU." The product is called "Histame." Has anyone heard of this? Is it really possible to increase DAO by taking a supplement (I'm skeptical!)? If not, is there any way of increasing DAO activity? I think I saw something about the old version of Benadryl (diphenhydramine) helping to increase DAO activity. thanks in advance for any input.

Sorry if I'm "muddying the waters" here, but could it be neurally mediated hypotension? I had a normal TTT and was told that the results were "normal" even though my starting BP was 79/48. When tilted upright, my heart and BP don't get drastically higher, which is the response that would indicate POTS. However, I had a TTT about a year later at Johns Hopkins, and they had me hooked up to an IV. During the normal part of hte test, my BP was low-ish, but again I didn't meet the criteria for POTS. However, at the end of the test, they administered a synthetic form of adrenaline (isoproterenol) through the IV and started doing the tilting again. My HR dropped from 107 to 65 and my BP dropped to 67/42. Apparently that response is indicative of neurally mediated hypotension, where you react abnormally to adrenaline (epinephrine). I don't know enough about the differences between ephinephrine and norephinephrine to know if your responses meet the criteria for NMH, but just wanted to let you know about this particular kind of dysautonomia. Good luck with finding some answers!

Thanks for posting this info!! I don't know if I've got similar issues, but it's certainly something to consider. Information like this is invaluable. Glad you got to the bottom of it - congrats!

Oddly enough, I can tolerate aspirin even though I have trouble tolerating many meds. I don't really feel any side effects when I take it. However, other NSAIDS can make me feel groggy (sometimes they seem to help me sleep). There's a condition called "Hughes Syndrome" or "sticky blood syndrome." I don't know much about it, only that the blood tends to clot too much which can lead to all kinds of problems (if I understand correctly, the red blood cells are "stuck" together rather than circulating as they should and distributing oxygen and nutrients, etc.). I got interested in it when I had some pre-surgery blood tests and was told that I was so anaemic that they couldn't do the surgery - only then they changed their mind and said I wasn't anaemic, it was just that my red blood cells had immediately clotted, so it appeared that I had very few to the person doing the red blood cell count. The next pre-surgery blood test - same thing happened. Good old NHS - did they look into it? Nah, just put a note on my chart saying to be sure to shake up the test tubes well when they drew blood. Anyways, because of that I try to take low dose aspirin a few times a week as a blood thinner.

I have the same problem - vitamins and supplements that really should be innocuous can make me feel terrible. I don't have any sort of a pill or medicine "phobia" but it's almost as if the things that should be the most beneficial to me (including B vitamins and co-q10) make me feel the worst. I don't know if it's because they have vaso-dilation effects, or if my body just sees them as foreign and launches some kind of autoimmune response, but I've tried different brands, different types of ingestion (even B12 and magnesium injections), taking very tiny doses - and I still end up feeling shaky and ill. I'm sorry I can't offer advice - but just wanted to let you know that you're not the only one!

I hope you can get some relief! I would be curious to know how well you fare on the thyroid meds. I have the same symptoms, other than the rapid weight gain: major hair loss, low body temp, overwhelming fatigue, depression, anxiety, brain fog, etc., but my thyroid tests were in the low/normal range. My GP (I'm in the UK) wouldn't prescribe thyroid meds, so I saw someone privately. Long story short, I ended up having a very difficult time trying different thyroid meds (T4, Armour, cytomel) and then trying to "support" my adrenal glands (licorice root, cortef, cortisone cream). I am a complete loss as to why, but they all make me feel utterly terrible. I still can't figure out if either a. it's not a thyroid problem at all or b. it is a thyroid problem but I just can't tolerate the medications (I overreact to most medications and vitamins/supplements).If you Google "Stop the Thyroid Madness" there's a wealth of info on that site about thyroid problems - I think (but am not certain) that they have a good docs list. Keep us posted - good luck.

So glad you were able to go! I find it makes such a difference if I manage something challenging: it makes me feel like my life is not over despite this rotten condition. Good for you!

I'm in England too (in the northwest) and typing this bundled in a fleece drinking a warm cuppa. The recent sudden weather changes have made me feel utterly awful. I'm a transplant from the States and I feel like such a wimp here b/c I am always wrapped up and shivering when my hardy local friends are happily running around in short sleeves and sandals. I do think it's about the barometer rather than the temperature: I came here from NYC, which certainly gets colder in the winter than it does here, but I don't feel so bad in the cold as long as it's clear and bright. It's just these weeks of wind and drizzle in the 40s that seem to kill me! I have a friend who suffers from migraines and he has found that changing barometric pressures are the one most consistent factor that bring on his migraines. Maybe it's the same for us?

I'm the same - my BP doesn't always reflect how I feel. One of my worst symptoms is unrelenting vertigo - a sort of dizzy, spacey feeling, as if I am not fully conscious. I feel like I can't "access" my brain - if someone says something to me, I'm struggling to process it. Weirdly enough, that sometimes happens when my BP is not too low - say about 98/68, which is quite high for me. I wish someone could explain exactly what's happening when I feel like that!!

I so agree with the grocery store problem!!! It's the being on my feet/navigating crowded aisles / bright lights/ too much noise, etc. I just have to put my head down and get exactly what's on the list. It's awful if I have to search for something or make decisions. I don't entirely understand the mechanism that causes this: I've heard we dysautonomia people have excess epinephrine and norepinephrine. If that's true, and that's what's causing this miserable hyperstimulated state, is there a medication or treatment that can help?

I've seen several things lately that support Dr. Rowe's position that inactivity is the enemy, so I've been trying to increase my activity level (either by walking or gardening). I'm finding, though, that even if I get through the activity without too much problem, the "post exertional malaise" is really kicking my butt for several days after, even though I don't feel like I've overdone it - I am so very achy, tired and just feeling "ill". I'm willing to accept that this may be coincidental and not related to the exercise, but also recently saw something that said that exercise induces a histamine reaction. Do any of the MCAD people (or any of you knowledgeable folk!) know if this is true? If so, is there a way of combating the histamine reaction (for example, do you take anti-histamines during exercise)? thanks!!!

Thanks for posting this - lots of good information. I found it interesting that people can have CFS and orthostatic intolerance before they meet the criteria for POTS or NMH. I think that's true with me - I've been told I have chronic fatigue for years, but it was only when I got very ill that I was diagnosed with NMH.

I was diagnosed with neurally mediated hypotension at Johns Hopkins almost 2 years ago. It seems to be what you are describing: orthostatic intolerance without the tachycardia. I get very dizzy and tired when i'm upright (that includes sitting down) but I don't have the typical POTS reaction (i.e., high heart rate tryng to compensate for low BP). Before going to Hopkins, I had a TTT where they said the results were "normal" - although my BP was very low, my heart rate didn't increase abnormally. During my TTT at Hopkins, the same thing happened but they then introduced (via IV) some kind of synthetic adrenaline - and my HR and BP plummeted. Apparently, this is neurally mediated hypotension. Sorry, I'm not very clear today - hope this helps!

It's good to hear success stories - gives me hope. I've been doing pretty well - went for a 2 hour walk on Sunday and then worked on Monday (1/2 day - I can't do mornings yet) , and I'm reasonably okay today! I attribute the improvement to the anti-histamines I'm taking. Nothing, but NOTHING else has worked, and most things made me worse. These are still early/experimental days with the anti-histamines. I take ridiculously tiny amounts of acrivastine (Benadryl Allergy sold here in UK) during the day, then diphenhydramine (that's the old Benadryl) at night. I'm far, far from normal - as I sit here at the computer, my head is subject to a big dizzy "swooping" surge, just to remind me of that. I'm often frustrated and very depressed with my lack of abilities - but this is a massive improvement over a year ago. Here's to everyone's improvement....

Thanks Jen - sorry to hear that you also go through the awful second guessing of every minute decision. I feel like the anxiety produces so much "clutter" in my thinking process that I am paralyzed by indecision. I do think, though, that some of it is just that my confidence has bottomed out because I can't rely on my brain or body to cope anymore with even the simplest of demands. For example, if my hubby says "do you want to stop by so-and-so's tonight" I'm frozen - I start thinking "well, I didn't get enough rest; I'm going to regret saying yes...but I always say no and then miss out on things and regret it.... but when I say yes I go and feel awful.... maybe if I rest now I'll be okay... who am I kidding, I am going to feel wrecked..." and literally don't know what to say. So I can't quite figure out how much is just unfocused, irrational anxiety that's causing the problem, or whether it's a rational response to this new state of incapacitation! Sorry to go on about it! It's good for me to hear what others are saying because hopefully it will help me learn to deal with all this!

So glad to read this post (although I'm sorry that others have to go through this rotten anxiety thing too). I used to be pretty fearless, especially about undertaking new things. (I travelled around Europe by myself at 18, packed up on a moment's notice and moved across the country to a new city on a whim at 21, etc.). Now I am plagued by anxiety. Even though I can "logic" it away, the constant nagging at my brain makes me utterly obsess over details to the point where I can't do anything! For example, packing a suitcase is so difficult (not that I travel much at all) - I end up desperately trying to plan for every possible contingency and ending up forgetting the most basic things. I can't figure out to what extent it's the horrible anxious feeling driving me and to what extent I'm trying to compensate for my diminished brain function (which is very real). There are times when I'm paralyzed just trying to get dressed because I might choose the wrong clothes for the weather, or for the occasion, etc. Really wish I could get some of my prior confidence back - I used to feel that I was very capable!

I ticked "tested positive for past infection" b/c my test was so long ago (1999) that I don't remember whether it was a past or current infection. I assume it was "past" b/c I don't recall any treatment for a current infection. I also had a pretty horrific case of mono when I was 18 (30 years ago!) and feel like that was when my cfs started (I seem to remember them saying that I had such elevated white blood cell count that they thought it could be leukemia - but I'm not sure if that makes any sense!). I was only out of school for two weeks, and never felt like I got completely over it.

Thanks for this - you've summarized in a really clear way some of the things I've been trying to understand and adopt. I especially agree with the points about trying not to pay too much attention to the "Something absolutely awful is happening here" panicky feeling. I've learned that, although I feel wretched, I'm not having a heart attack or stroke or anything life-threatening. I also agree with the point about exposure - I HATE HATE HATE going to the grocery store (too much stimulation by way of sound and fluorescent lights and navigating through people with carts) but it's not as bad if I do it regularly. (However, I will say that the thing that has made me even remotely able to function was the very low doses of antihistamines I've been taking for the past year or so - prior to that, I could barely walk out to the car, let alone push a cart through a grocery store.) thanks again for this - very inspiring.

Futurehope, please do keep us posted on your visit! I'm another person who suspects there may be some MCAD connection with my symptoms - when I heard the description of mild anaphylaxis, I thought "that's me..." Plus, in the past year or so, taking acrivastine (Benadryl allergy) during the day and diphenhydramine (the old Benadryl) at night has really, really helped (just today, my husband looked oddly at me and said "you're being productive -?" because I was out in the garden raking). I still have utterly intractable fatigue, and can only do about 1/2 of what a "normal" person can - but still, the anti-histamines have given me some improvement for the first time in years. Good luck with your appt.!!!

I didn't bother with organic or "health" food in the past, thinking it was an overhyped way to sell food at higher prices. However, two things have influenced my choices: first, I agree with Bunny's post. The more I learn about processed food and big food manufacturers, the more I want to eat things that are as unprocessed as possible (not so easy for someone who hates cooking!). Second, I'm not a vegetarian. I really don't want to open the vegetarian/non-vegetarian can of worms here but I have learned about factory farming methods - I would like to know that if animals are being raised/killed for my consumption, that they've had relatively decent lives (yes, I know that free range, etc. is misleading, but it's better than some farm practices), AND given my health problems, I really don't want to eat an animal that's spent its entire life being injected with growth hormones and antibiotics and wallowing in filth!!! I hope that's not controversial; I don't mean for it to be. I do respect others' choices; just wanted to say how I make my own about what I eat.

This is all so familiar - I am so utterly useless in the mornings. I wake up early-ish (btwn 6 -8 am), too, but I've learned that I do much better just lying in bed until about 11 am. Most times I can fall back asleep and then I'll do much better that day. I just can't sleep at night - sometimes it's because of pain, sometimes anxiety, sometimes both -no matter how tired I am during the day. I have found that Benadryl (the old kind - diphenhydramine) in very low doses works - even if it doesn't make me sleep, I seem to "rest" better. Wish someone could solve this! I have a part time job where they let me come in at 1pm. I'm sure there's a lot of raised eyebrows about the fact that I waft in that late, but so what -- at least it means I can work a bit. Just wish I could sleep at night so that I could work a full day.

Thanks Dani - I agree, it's a vicious cycle. I just haven't figured out a way to function (even at the most basic level) without the adrenaline.

I have terrible concentration problems - I often wonder if they correspond to times when there isn't enough blood and therefore oxygen in my brain(?) If I'm "wound up" b/c I'm anxious about getting something done, I can concentrate quite well, but only for a limited time, and afterwards I feel very depleted. It's almost like the only way I can achieve anything is if I'm in a state of heightened anxiety --- but then the anxiety and activity takes its toll and I'm worse off than before.