Dizzysillyak

I thought most were tested for pots / orthostatic intolerance. I have a cfs diagnosis and have had poor man's tilt table tests since 1990. I don't see how knowing this has made any difference in how cfs or pots would be or has been treated at least by traditional medicine. From what I've seen, They only know the bandaid approach. Integrative or functional doctors look at cfs or pots or any chronic illness as a by product of a non functional immune system. Fixing the immune system is where things can get complicated but imho, they're getting better at this. Tc .. D

If we looked at our psych this way then every significant emotional event in anyone's life could be classified as causing ptsd. Childbirth, losing first tooth, falling off a bike, etc. What we learn from these events is that we don't want them to happen again. Fwiw, I wouldn't attach any psych diagnosises to this illness or any other physical illness because from my experience the medical profession and general public won't see past this. We're much more educated on our conditions than most. Fwiw, I hadn't read that people here were feeling better with propanolol. I have read that most of us have allergies particularly to food. Gluten especially. And please don't think I don't appreciate your feelings here but While of course having a pots episode is alarming, I wouldn't say it's worthy of a ptsd diagnosis. No more than burning my hand when cooking. Or stubbing my toe. Etc etc. Being upright too long induces elevated hr, petite mals and sob for me, but I know that these are completely controlled by laying down and allowing proper blood flow. So the scarey feeling is short lived. Btw, I used to feel like crap 24\7 until I eliminated the toxins from my diet and lifestyle. I only discovered how much laying down helped afterwards. Tc ... D Ps. Imho, the trauma brought on by the ignorance of the medical community in dealing with cfs or pots or most chronic illnesses can be more damaging emotionally than the condition itself and could actually lead to pstd. Blaming the patient and /or not intelligently assessing the patient's health, is more than non productive, it's damaging. Not to mention, imho as a ex professional in computers, it makes doctors look ignorant and we all know that they're not. But, If they had a working knowledge of what's entailed and how to get to the root cause, we wouldn't feel so traumatized. And if proper treatment happened quickly enough, imho many would heal. Bandaids only prelong the illness.

Thanks everyone. I'm exhausted from getting out today .. Yay .. So I'll have to try to understand this tomorrow. I googled angioedema tho and I found some interesting info on the mayo clinic site. I was just trying what I thought was a simple remedy. So much for that idea. I have the eye watery problem too and agree that my eyes still feel dry when this is happening. Weird. So tears and eyeball fluid are different. I wonder if there's a bacteria connection. I'd heard once that putting raw honey in our eyes and then removing the excess and tears with water was good for them. I tried it and it burns at first but then stops after a few times. I'll try that too. tc .. D

Thanks for reminding me about the neti pot. I keep meaning to try this again. I empathize with you on the contacts. I wear glasses and my eyes still hurt. My nasal passages and eyes are still dry from taking benadryl two nights ago. There's got to be an explanation for why we do this. I found info on celiacs having damage to their solute transporters in their guts so there's one possibilty. But maybe there's an auto immune component too. How's your saliva ? My mouth is dry unless I take probiotics with fos (blue bonnet). Making kefir with this worked the best. I'll try that again today and let you know if it helps this. Btw, if you haven't read this already, certain foods, esp dairy, cause allergy symptoms to be worse. I know someone who owns cats but only reacts to them if she has dairy. My allergic reaction to my dogs was reduced via diet but not as much as my freinds. My problem is that I keep developing new allergies on top of the million I already have. Rotating my foods would help but it's a pain to keep up with. Tc .. D

I completely understand your feelings and I hate hearing that you're going thru this. Hugs ... I'm now 56 but I've been on disability since I was 34. I had a great job with great co-workers too. Please don't take this the wrong way as I'm only trying to help .. But I see you're trying meds and pt, I respect that as I tried that too, but IF I could go back the first thing I'd do is change my diet to a paleo / wahls diet. Then I'd go see an integrative / functional doctor who would look at possible root causes. There's a chance that changing my diet alone back when I first got sick would've helped me regain my health like most gluten sensitive people do. However, it looks like not addressing this has complicated my illness to the point of no return. Not that I'm complaining or whining, I'm just trying to make my point. In my opinion, more than likely, further damage will occur if you don't look for the root cause. These can be gluten sensitivity, Lyme, candida, nutritional deficiciecies, hormone imbalances, bacteria, parasites, heavy metals, etc .. Tc .. D

Sorry to hear you're doing this too. Do you take meds regularly ? I was wondering if this reaction would lessen over time ? Or would taking this med every other day help ? It's funny, I can feel post nasal drip in the back of my throat right now but my eyes, nose and sinuses are still dry as can be. I can't think of how I'd google this either. It just doesn't make sense ..

Does anyone else get extremely dry eyes and nasal passages from allergy meds ? I've only been taking 1/4 tsp of children's dye free benadryl at night for the last few nights and my eyes and nasal passages feel like they're as dry as cotton. I'm chronically dehydrated despite hydrating all the time but I don't understand why this little bit of medicine would make it so much worse. But, my optometrists always diagnose me with dry eyes. I'm taking this because I'm having problems with throat swelling from time to time and the trigger keeps changing so I was trying to stop it before it happens. I thought it would just be treating the problem not causing another problem. Do others with dehydration notice this too ? I can't figure out why someone like me with a ton of allergies would dry up from such a small amount of benadryl. Ideas ? Tx .. D

The advantage to going to the er when this is happening is that they can runs tests that may identify why this is happening. Some labs are only valid if taken while symptoms are there. I did this once when I had a two hour seizure / severe myoclonus episde. The medics kept telling me not to breath like that because it would cause me to hyperventilate. I was on an oxygen mask at the time. I have no idea if this is related to what you're doing. But .. Have you tried taking an anti seizure med to see if it helps ? I take klonopin for my seizures / myoclonus. With your low hr low, I'd only try this with a doctor present. I haven't done this again but I also gave up ALL caffeine and ANY food that was probably cross contaminated with gluten. Both cause neuro symptoms for me. Tc .. D Eta. My daily breathing problems are from hypoperfusion (lack of blood in upper body when upright). Dr peckerman explains this.

Saline iv's didn't help me either. I used to have a lot of problems with veins collapsing and pain with iv's but the paleo / wahls diet (gluten free + + ) AND making sure that I'm thoroughly watered and salted up prior to these has helped. I wasn't told that I have sfn but I wouldn't be surprised. I've had so many neuro symptoms including ataxia. I have a ton of allergies too tho. I'm experimenting with a parasite cleanse now to see if it helps. Fwiw, I was surprised to find out that himalaya liver care stopped my neuro reaction, vertigo, to this cleanse. I'll be taking a closer look at why once I'm up to it. Tc .. D

Congratulations. I felt like I'd won the lottery when I discovered how sick gluten made me. Like you, I went years before this was uncovered. In fact, I had ataxia and needed a motorized cart for 16 1/2 years. This went away one year post gf diet. I'm mentioning this so you know that healing from gluten damage can take time. The people at glutenfreeandbeyond have more stories in the journey section. Fwiw, It's been 7 years now since I eliminated gluten and most other food intolerances. Most of my 1000 symptoms are gone now but I still have pots. Interestingly, I had oh (orthostatic hypotension) but it went away in feb either due to antibiotics and anti parasite treatment or switching to the wahls diet. I didn't gain any functionality because of my pots tho. But I get petite mals and sob with my pots. I didn't do the enterolab testing. I've done genova and metametrix stool analysis over the last 4 years. My integrative / functional doctor supervised these and Medicare paid for them. These have been great fir diagnosing food intolerances, bugs and enzymes. Fwiw tho, my reaction to dairy doesn't show up on these tests. I get huge dark shiners that come on rapidly but take 7 - 10 days to resolve. Tc .. D Ps. Not to be a debbie downer but the "gf" foods available aren't really gluten free. We don't have any standards in the us so we're at the mercy of the manufacturers. The fda's last action here was to poll the public on how much gluten we thought was safe. Seriously ? ? I've found sticking to whole foods / wahls diet, helped me tremendously. Oats are notorious for gluten cc but other grains have been implicated as possibly problematic for those who are gluten sensitive.

I've eliminated the majority of my symptoms via diet and supplements but due to damage sustained from leaky gut (eating the wrong foods, allowing bugs to thrive and heavy metals to collect) I'm not sure I can ever heal completely. Also, I'm a celiac so my intestinal villi get damaged when I come into contact with gluten and it's freakin everywhere. And my body over reacts to minute amounts of gluten by producing too many antibodies. I'll never stop trying new treatments tho. I just started a serious parasite cleanse. Next heavy metals. I'm optomistic some days but try to remain realistic. Tc .. D

Dr sarah myhill, cfs expert in uk, recommends the paleo diet for her patients. Then there's dr terry wahls diet that she used to help her ms. I haven't seen a pots diet but if you look on the web for chronically ill related diet, you'll see most people recommending that gluten, dairy and soy should be avoided. If that doesn't work, move onto a paleo diet. The reason being that the nutrients in meats are easily absorbed. I prefer wahls because of the emphasis on variety and fruits and veggies. She has recipes but googling paleo recipes will get many more. Tc .. X

Thanks. I've had to learn a lot about leaky gut in the last seven years so I try to help others get thru this easier. It's a shame we have to go thru this but at least there are others on the web helping us. I even tried organic maverick ranch bacon multiple and reacted everytime. Same with tomatoes. I tried cooking my own organic tomatoes and that didn't help either. I just noticed that you're on a ppi. Have you looked at the long term side effects from those ? Most of the people I know who react to gluten and then eliminate it can get off their meds. Especially digestive meds. I'm not up on the withdrawal process of ppis tho. I would assume going slow is important tho. Dr wahls ted video is a favorite. Good luck .. At least your mates can appreciate your dietary choices .. Tc .. D

When I first started working on my leaky gut in 2005, I was reacting to most foods. But all that calmed down after about a year of eating bland foods. Then I slowly incorporated new foods into my diet and now can eat a wider variety. Have you tried that yet ? Are you taking probiotics and s boulardi ? Being strict about avoiding gluten may be what you need now. I still get antibodies to gluten and egg whites. And allergies to soy and dairy. And bacon and tomatoes cause my fibro pain to return. But there's a ton of foods that I'm good with. I have chronic hypoglycemia due to hyperinsulinemia. It's funny. I avoided fruit for years due to hypoglycemia but when I switched from the paleo diet to the wahls diet, I very slowly increased my fruit to around four servings a day. As long as I don't eat too much and I follow it with some protein or fats I'm good. My only problem now is that I get carried away sometimes and I eat too much.

I've actually been on the wahls diet (basically it's tons of fruits and veggies) since jan. It's going really well. I reduced my meat from 3/4 lb per day to 1/4 lb and feel a lot better eating less meat. The fruit is helping me energywise too. I just can't pig out on fruit. I also tested low on elastase too tho, via metametrix, and taking creon is helping me now too. Kow .. If you don't mind me asking, why is your diet so limitted ? We need variety. Granted it's not always easy but going to a health food store that carries a large variety of produce helps. Oh and Dr terry wahls has some great info / videos on diet and leaky gut. Tc .. X Ps. I don't know if it was the wahls diet or the treatment for h pylori and parasites I did in dec but I haven't had orthostatic hypotension (bp drop) since feb. Kow. I still have pots tho so I didn't gain any functionality. There is an article on pheonix rising about a chemical, (isopr?? - comes from veggies), that's supposed to help with blood volume.

I don't experience facial flushing so I'm not familiar with it. But since you mentioned that the gf diet helped yiu and now after eating more sugar which I assume means more gf goodies, I'd look for gluten cross contamination. Everyone responds a little different to gluten cc. Some respond immediately and for others it takes repeated exposure. The metamatrix stool test can show you if you have leaky gut. Fwiw, I like the way Dr Fasano explains leaky gut. Bad Gut bacteria, parasites, etc can make anyone sick. My exposure to h pylori made it hard for me to stand up at all. Tc .. D

Her solution is drugs that no doubt have side effects. I was on diamox and allergy meds for several years but it didn't help my me/cfs / dysautonomia. Gfcfsf,etc Diet has helped me more than anything. I see a certain doctor on tv talking like this to us too. It's just terminology Doc. Ugh .. Tc .. D

I have me/cfs but I've been unravelling my diagnosis for 7 years now to see what's behind it. I know I have a few diagnosises that could be behind this but I'm still working on others like allergies, petite mals, parasites, etc. I have pem (post exertional malaise) just from trying to keep up with normal daily life so this holds me back. My pem means all cognitive functions like reading, writing etc, are more difficult fot 1 - 3 days post a day of running errands. Fwiw. Before I knew what pem was and could explain it, people in my life thought I was moody or depressed every few days. (geesh) I just didn't have the energy to be sociable on any level. Thankfully, we have the internet so we can learn this sort of thing. I've tried a lot of supplements in the last 5 years and mb12, adb12 and p5p all gave me energy for a few weeks but then they induced total and complete insomnia. I had to up my sleep supplements to the point that I couldn't wake up the next day. I'm going to try taking 1/4 tsp of target children's dye free benadryl since it's an all purpose allergy med it should help me with however my body is reacting. I'm getting throat swelling and it's the only med I've found so far that stops this right away. And 1/4 of a .125 mg sublingual tablet of klonopin because I have petite mals everyday when I'm up too long. I'm taking these at night and already sleeping like a log. I was being woke up constantly by sounds in my neighborhood. But not with these .. Hopefully this will take care of my allergies and petite mals and give me energy or at least lessen the burden on my body. Tc .. D Hi kim, I'll have to look up your meds and supplements later. I'm still waking up. Thanks. D

I'm back to wondering why some of are fatigued. Do those who aren't fatigued have high bp ? I feel a bit better when my bp is higher than normal. Granted I get angrier easier too. Do you have thyroid problem ? Fwiw. I have hashimoto's but my tshs are barely out of range. My doc has run all the right tests. I just have thyroid antibodies that vary from high to low. If we have poor blood flow aka hypoperfusion, all of our upper organs are losing out on nutrients including oxygen. Plus we're not detoxing properly because of reduced blood flow and our organs can't do their jobs. So how can anyone feel good when this is happening ? I can feel hypoperfusion (muscles are tight / brain and lungs shut down ) in my upper body, can you ? This goes away after laying down so it's obvious. Is it from pathogens like bad bacteria or parasites ? H pylori and parasites made me close to bedridden. Is it from allergies ? I had these since I was 19 but wasn't tired back then but maybe it's the elevated degree or how my body now reacts to an allergen. I'm swelling nowadays and that's tiring. Is it our adrenals ? I have adrenal fatigue. Ideas ? Others ? Things that help my fatigue are juicing, b6, resting and eating healthy / wahls. Allowing 500 - 1000 mg Of straight sea salt to dissolve slowly in my mouth helps if I'm low on salt. Nothing helps the hypoperfusion tho. I can have energy but I'll still get petite mals and sob from being upright. Tc .. D

Congratulations. I've been in disability since 1990. Mine was disapproved until the judge met me. Lol .. I'm sure your medical records helped. I agree it's definitely bittersweet but the money will be nice. Hope you're feeling better. Tc .. D

Are allergists helpful here ? The one I saw years ago ran tests and then just took a stab at what meds might help me. I could've tried different meds without the doctors appt. Are the prescription meds any better than otc ? I was thinking of trying an inhaler for my throat swelling symptoms. Do these work ? Or is there a med for that ? Btw. My allergies are worse when I'm eating foods I'm allergic too. However keeping up with what I'm allergic is a real pain. Thanks .. D

I'm in a similiar boat. I found that I can take target dye free children's benadryl but only 1/4 - 1/2 tsp at a time. Even that makes me feel loopy tho. I'd never try to drive like this. I've been getting swelling in my neck / throat area off and on for the last year and just learned for sure that I'm allergic to metagenics probiotics. And these are $54 for 30 pills. I also did this from candidase and virastop last year. The benadryl works for this if I let it dissolve slowly in my mouth. But I'd like to stop this from happening if there's a med that could work without making me loopy. I tried nasal crom yesterday and it semed to help but not as much as the benadryl. It dried out my sinuses a little on the first dose but taking a second dose 8 hours later made me feel waaaay too dry. I couldn't fall asleep. Heck, that was over 16 hours ago now and my sinuses are still too dry. My digestive problems are pretty much controlled via wahls diet, gas-x, natural calm and ginger tea. I use natural calm nightly because it helps keep me regular. I'll use it during the day after meals if I get gastroparesis though. It seems eating too much meat brings on my gastroparesis so I'm down to 1/4 lb spread out throughout the day. It's just that sometimes I can't resist a hot freshly cooked steak. : ) Thanks for starting this. D

Congratulations !!! Your story is such an inspiration .. Tc .. D

I have shakiness and petite mal feeling but not sure about anxiety. I have both hypoglycemia / hyperinsulinemia and adrenal fatigue so I'm trying to work on both. Both can account for this. I seem to do better if I have a small amount of sugar plus real meat and leafy greens for breakfast. But I still can't get out of my house to run errands until after lunch. I'm usually fine after lunch. It's a good idea to look at our meds and supplements. Hopefully your doc will know more too. Actually, the last time my oi got too bad for me to stand up for more than a minute or two without feeling horrible I had h pylori and parasites. I also notice that mine is worse if I've had too much magnesium the day before. Or when I take too much theanine (300 mg) for myoclonus. I assume it's because both slow down our hearts. I'm weaning myself off melatonin and 5htp to see if that helps too. I've been off theanine for 2 weeks. I've taken melatonin, 5htp and theanine for sleep for about 4 years without any problem other than feeling too groggy the next day if I took too much. Tc .. D

"Commins said blood levels of antibodies for alpha-gal, a sugar found in red meat, lamb and pork, rise after a single bite from the lone star tick. He said he hopes experiments that combine tiny samples of tick saliva with the invisible antibodies will prove the two are directly connected." Interesting .. I have trouble with digesting these meats but assumed it was either gastroparesis or lack of digestive enzymes. Maybe that's just a part of what this tick bite does too tho. Doctors who practice Functional medicine work to discover the root causes by running a multitude of tests. But in many cases, like mine, they have their hands full with the variety and severity of positive diagnosises. I'm on Medicare too and broke so my tests are limitted to what Medicare will pay for and what treatments / supplements I can afford. I may ask to get this test run tho ... tx ... d