Dizzysillyak

My hr jumps 30 pts and stays there until I lay down. I can feel the strain on my upper body from hypoperfusion. Esp my heart, lungs and brain. If I didn't have a petite mal I think I'd still be functional tho. The longer I push the harder it is to think at all and it becomes dangerous. I run into things, speech is impaired, definitely can't handle a knife ... Maybe a 30 pt jump isn't the best way to diagnose pots ? Hypoperfusion maybe ?

Is it true that deconditioned people get pots ? By that I mean does their hr jump 30 pts after simply standing still for 10 minutes ? Have they done actual ttts on deconditioned people ? And how do they define a deconditioned person ? Fwiw, I try not to let this kind of info bother me. Give 'em a day and they'll say something else stupid. Lol. Tc .. D

I'm back. I forgot to say to do a search on gluten on this site. We have a lot of great info here. Also "theglutenfile" is a great reference for articles on gluten damage. One doesn't need to be allergic to gluten to have a problem with it. That goes for other foods too. I don't have any markers for dairy but my shiners more than speak for my reaction. Tc .. D

It took me a whole year to start walking normally so you may want to give this some time. I saw earlier improvements but this was my biggest. : ) I'd switch to a paleo / wahls or more wholesome diet with nutrients as soon as you're up to it. Getting tested for nutritional deficiencies might help too. Tc .. D

I've been juicing kale, collards, carrots, apples, lettuce, ginger, beets, etc since march and my hypotension hasn't been affected. I "think" what you're seeing is a sales pitch. I've heard juicing can help us lose weight too but from what I've seen unless that's all your eating, its not going to help. Sadly much of what we see on the web is pr. As far as what to juice, I'm still working on that myself. I have an oxalate problem and allergies so it's a work in progress. And it changed. For instance, when I started juicing I was fine with beets and ginger but now they hurt my throat. I really don't know if it's an allergy, the texture of beets and ginger or oxalates. Several of the foods I started out with a now problematic. But I can juice lettuce and apples without a problem. I'm backing off juicing as much due to the increase in intolerances. Maybe it's not good for everyone. Tc .. D

I raised a two year old on my own most of the time after coming down with me/cfs/oi and hardly ever rested. It didn't help me. Now after 22 years, I'm mostly bedridden / couchbound and am finding that I feel better physically and emotionally if I rest more. I'm even laying down while socializing now. It works great for my petite mals. I think so much better this way. I'm doing well to keep up with my daily tasks, but I'd try exercising if I had a maid, chef and gopher tho. I have tried exercise routines several times only to realize I was in constant pem (post exertional malaise) and couldn't think. I was really short tempered too. But I was determined to keep on exercising. It became addictive to me. I respect doctors for their ability to learn but not what they learned. Most of what they're taught is based on which drug or procedure can be used for a certain symotom not on finding the cause of the symptom.

Hi Issie, I took a look at her blog and noticed that she has a long list of possible triggers. This list is why many of us just go on the Paleo diet. That way we're not reading labels trying to avoid each and every chemical found in our food supply. Also, once someone gets all those chemicals out of their system they're less likely to respond to everything. I still react to certain foods like gluten, dairy, soy, etc but I don't react as strong to others. It's early for me still so that's as far as I got. Tc ... D

Hi, I was prescribed clonazepam / klonopin for nocturnal myoclonus and a seizure disorder. I just started experimenting with it during the day if I'm feeling jittery. The last time I used it during the day was because I hadn't slept well so I was having pre seizure jitters. I'm new at recognizing this feeling. I only need 1/4 of a .125 mg tablet to calm me or help me sleep now. When I was eating and drinking excitotoxins like gluten, hfcs and caffeine I needed .5 - 1.5 mg. And that didn't always work. Hth .. D

Hi sue, What timing. I just ran into a thread on pheonix rising about this. The title is "doctoral student ... ". Rich v posted a few minutes ago sbout which websites to go to. Tc .. D

Great article mcblondie .. ; ) .. Thanks. I'm always dehydrated despite drinking plenty of water so I may want to reconsider this. So what kind of doctor knows which iv would be best for which patient ? What labs, if any, do they run to determine this ? My problem with needles is the pain from the puncture area. It can be extremely painful and the pain may last for days or weeks. I'm perfectly fine sometimes too tho. Is it the needle perhaps ? Or maybe the person sticking me ? I stopped doing b12 injections because of residual pain and bruising too tho. I was always sore and rarely noticed any improvement. I had 5 - 6 meyer's cocktails in saline iv last year and the pain lessened after about 3. They were too expensive for me to continue and I never felt better. Other than my veins stopped hurting. Any ideas what that means ? Tc ...d

Congratulations. Are you taking the meds in your signature ? I may have to try more meds. I actually just added klonopin back in for sleep as needed after being off it for 6 years. It's working like a charm. Tc .. D

Hi relax, I have a freind who's taking hydrocortisone too who says it perks her up. She's still mostly bedridden tho. She has cfs tho not just pots. Not that just pots is minor but you know what I mean. I mention this because I wonder who would benefit from hydrocortisone. I thought I read that it could be a problem after awhile because the adrenals wouod stop making it. But if our adrenals aren't making it anyway maybe we should take it. Or is dhea and pregnenolone a better option ? Tc .. D

If you have antibodies towards one thing, aren't you likely going to get antibodies to others ? If so what's the purpose of researching certain antibody links to any illness ? Don't our bodies develop antibodies from having a leaky gut which allows foods, etc to enter our blood streams that shouldn't ? I know I have celiac disease, egg white antibodies and hashimoto's. That's as far as my testing has gotten too. Tc .. D

Can they tell which of us would benefit and which ones wouldn't before recommending 3 months of exercise ? Maybe the Pacific labs test for PEM would work. But, from what I remember not everyone is allowed to do the Pacific labs test tho. Fwiw, I had this done performed back in 1992 so other labs can do this. And are they willing to order a maid, gopher and chef so we can focus on exercising instead of staying alive ? If so, I'd try it. Actually I tried it without the help and stayed in a state of chronic pem. Of course it made my muscles stronger but my oh and pots stayed the same. I'm not sure if there were specific exercises I should've tried tho. Tc .. D

I was diagnosed with me/cfs back in 1992 (became ill in 1990) but didn't realize I had pots until last year when I did my own ttt at home. I knew I had oh (orthostatic hypotension) because several of my docs had performed the poor man's ttt test on me but no one had explained that my hr might be jumping 30 + points after 10 minutes. Knowing this helped me understand why I feel like crap after I've been upright for awhile. Being diagnosed with cfs interferred with me knowing other diagnosises I had too. I have hyperinsulinemia, hashimoto's, celiac, food intolerances, myoclonus (not just during rem), gluten ataxia (gone since 2006), hypoperfusion, etc but these were never looked for by my doctors because I'd been diagnosed with cfs. I don't know why but there's a laziness and poor attitude doctors adopt if the patient has cfs. My life is much better now that I understand and am dealing with these other diagnosises the best I can. This ignorance / laziness in the medical field is one of the reasons that I post on the web. I want others with cfs or other diagnosises of combined symptoms to take a look at each symotom and try to get to it's root cause. This is what integrative / functional doctors do. My current doc is the first doc in almost 20 years to look for root causes. What a waste ... Tc .. D

Digestive enzymes help me with this. I've been experimenting with these for 6 years and found ones that work for me. Between creon, candidase (cellulase and high protease) and even virastop I avoid discomfort with this. I still have pooling tho. Mine's worse from over eating than anything. Still taking these digestive enzymes helps with that too. Tc .. D Ps. I've never seen a digestive enzyme that can counter the effects an allergic or immune system reaction to foods tho. I have to ake benadryl or suffer thru my immune system reaction.

What are they doing about your iron ? Do they know why ? Imho, it's possible getting that up will help you tremendously. Low iron made my symptoms much worse. It's common to be anemic if you're a celiac too. Tc .. D

I don't understand this either but I saw an interesting article on celiac genes by dr lewey where he explains genetic testing. Just google "celiac genes lewey" and it's on celiac dot com. Tc . D

Hi sue, Good to hear you had a great doctor's appt. I was guessing you had an allergic reaction. I made the mistake if trying about an ounce of coffee again two days in a row and I can still feel that my muscles are tight 24 hours later. Never again .. Fwiw, dr terry wahls cured her ms with diet, supplements, etc. . Her info is on the web. I had white lesions on my brain but they disappeared after the gfcf diet. Links between gluten and ms are also on the web. Tc .. D

Hi jangle, I haven't had any success with saline ivs but I do get relief from taking 1000 mg of salt sublingually (on top of tongue actually) at times. And it lasts several hours. I'm sure it only works if that's what my body needs. The same is true when it comes to keeping my blood glucose regulated. I only need to sugar load when it's gotten too low. I use either table salt or sea salt. And allow 250 mg at a time to SLOWLY dissolve in my mouth when finished taking all the salt I drink 8 - 16 oz of water. Any faster and I get stomach cramps. Also it needs to dissolve in your mouth. Don't swallow it. Over time, I've found that 500 mg helps but 1000 mg has a more lasting effect. A word of caution tho. The very first time I did this I did it too quickly and got a headache. It takes me about 10 minutes now because I take the time for it to completely clear my mouth and upper esophagus (i think) before adding the next dose. In other words my saliva returns to it's normal state. Of course you may not need this much salt. I can feel it helping as it dissolves and guage it from there. Eta .. So I tried this while I was typing this to see if it's what I was needing but it wasn't. I noticed but forgot to mention that sometimes my tongue will feel burned after doing this. I don't know why tho. Hth .. Good luck .. D

Thanks for the small fiber neuropathy info. That makes a lot of sense in my case since it's been linked to celiac disease. I started looking at supplements for this and found methylcobalamin, b12, so far. I'd expect adenosyl b12 to help to tho. Tc .. D

"extended abdomen" .. Too funny .. Tx .. D

Cool ! I hope this works for you. Please keep us posted. Tc .. D

No. Interesting idea tho. I came accross a third one recently but I can't remember it right now. It was recommended by a dysautonomia or me/cfs doctor tho. I wasn't paying attention because my body is too sensitive to ivs to pursue this. Tc .. D

Sorry to hear you're having this. Different doctors use different ways of putting the patient out. Actually, I've heard of people not being put under too tho. I've had 3. The first time my doc didn't knock me out totally and told me that I would just feel uncomfortable. That was a lie ! It hurt so bad and I was told to be quiet and keep still. I stopped seeing this moron. After that I made sure my doctor knew I wanted to be knocked out. I "think" I even asked for a valium to take before getting to the clinic too. I didn't feel anything and wasn't traumatized by the experience. Tc .. D