Dizzysillyak

Hi steve, Looks to me like you've done the traditional medical route. Have you tried seeing an integrative doctor ? These are medical doctors but they also understand how to help the body heal itself. If not fwiw, the first step they'll have you try is an elimination diet. I'd suggest the paleo diet because it eliminates all toxins and the most common food intolerances. Eliminating one at a time is time consuming and may not provide your body the break it needs from toxins. Withdrawal reactions can typically be avoided by slowly removing toxins. Most of your symptoms could be from intolerances including allergies. Taking an otc allergy med despite being neg for mcas may help. There is info on this site about mcad and mcas. I'd look at parasites and bad gut bacteria too. At home treatments can be found on the web. Hth .. D

Me, too. I hate that being supine is the only thing that helps me so much with my OI too. I have to say that knowing this is better than thinking everything that happened to me was from my CFS. This is at least treatable even if only for the time we're down. It takes my body a solid hour to totally recover from hypoperfusion. Getting up sooner results in the same POTS HR I had before laying down. I can't have my head elevated much because my brain is so blood deprived too. I'm experimenting with keeping the room dark and my eyes closed to see if it helps cut the time it takes to recover. I don't experience pain when I'm upright tho. Have you had that looked at ? I only experience pain if I have an infection or my back is out for some reason. I get kidney stones on a regular basis but luckily pass most of them. These can cause local severe pain in certain areas but also generalized pain throughout my torso. Symptoms are typically just annoying. Only stuck stones cause a severe reaction. Oxalates nail me. I get the afternoon crash too. I wonder if that's adrenaline related ? We use a lot of adrenaline being upright in the mornings.

I immulate how it's done at the doctors office by standing next to something about shoulder high that I can rest my arm on. My entertainment center is 1 step from my sofa so I use that. Mine's never shown any wacky numbers tho. Maybe yours needs a new battery ?

I can slowly swim on my back just using my legs forever but not on my stomach. I think it has something to do with being able to breath at my normal rate. Has he tried that ? If he wants to do other swim strokes on his stomach where he has to hold his breath, maybe flipping over on his back every few strokes and resting would help. This is what works for me.

Actually now that I think about it, I'm not exactly sure if the inhaler the doctor had me use during a breathing test was the same one he gave me to try. I was so shakey after the test, that I never tried the one he gave me.

I don't know if I have mcas, mcad or a ton of allergies. My skin prick test was positive for most of what I was tested for. My recent tryptase was in the normal range but it was tested while I was on 30 mg of Wal-zyr daily + Benadryl + ?. After reading about what the specialists would do (instruct patients to try different meds), I opted to stay on my meds that are working. If they didn't work I'd see a specialist. I wanted to add that I typically use 1 tsp of the children's dye free liq, I prefer the walgreen's brand, immediately when this symptom occurs. And repeat if needed. So far, kow, I only needed to take 4 adult Benadryl once spread out over a 30 - 60 minute period. My dd has anaphylaxis so I knew I could do this. I've never used an epi pen. I'm on 30 mg Wal-zyr everyday now so my lung and esophagus symptoms are under control. Kow.

I'm not certain but maybe once he got the results he needed, hr showed pots, he stopped because was trying to keep you from going thru an extended recovery period afterwards. Or maybe he did it so he wouldn't have to keep you if you passed out, etc. I say that because on my last pmttt, where I tested positive for pots, I had a petite mal and severe sob so being supine wasn't an option. My recovery took hours. I'm not sure how they'd deal with this during a ttt. I was unable to move. I thought it was odd that he said this was beneficial for you. A cure would've been beneficial. Lol.

You're describing one of my allergy symptoms. Taking Benadryl helps me within 20 - 30 minutes. You may want to try taking Benadryl to see if you respond. I only need 12.5 - 25 mg to stop this but you can take more if needed. My allergist gave me an inhaler but it lowers my seizure threshold so I never use it. hth ... d

I can have a weak cup of Sozo coffee after I've been up for about 2 hours and had a good breakfast. Otherwise, I feel horrible. This brand isn't making me feel jittery like other coffees. I gave up caffeine a couple of years ago but found myself craving the taste of coffee. So here I am again ...

Hi Issie, Thanks for the info. I'm not sure if it actually applies to us tho. All we have to do is lay down for our bodies to experience reperfusion. BTW, Dr Peckerman explains hypoperfusion if anyone hasn't seen it yet. Just google Peckerman CFS or hypoperfusion. I'm not sure about others but I can feel it happening. The blood rushes back into my head immediately but it takes a solid hour of being supine for me to completely recover if I've been up too long. I knew it took an hour for my lungs to relax enough for me to easily take a deep breath again. But I also did my own PMTTT and found that my HR jumps back up within one minute to my POTS HR, 110, if I get up before the hour is up. My HR goes down to the 70's range after 15 minutes of being supine but gets down to the 60's range after 45 minutes. Then it takes my body another 15 minutes to normalize back to my "normal" / relaxed state before getting up. My lungs appear to be the last to relax but I have lung scarring. I can't imagine how anything could help this process. Either the blood is in our upper organs or it isn't. I've taken multiple parasite, bacteria, etc treatments over the last 8 years and none of these made any difference. But, I have a list of possible physical causes for my OI that I won't bore you with ... lol ... TC .. D ETA .. Issie, I hope I didn't sound like I was arguing with you. I was just brainstorming this with you. Please keep the ideas flowing. D

From my experience I can tell you that gall bladder pain, severe digestive pain and kidney stones hurt worse when sitting up. Actually, my last kidney infection was so bad that I could only lay down at an angle on my left side. My whole right side was inflamed. ER doc thought it was appendicitis but was smart enough to order cat scan. : ) Imho, You need to go to the ER when in pain. So many chemical levels and inflamation markers change quickly so something could be missed. Fwiw, I'd skip telling them your orthostatic intolerance symptoms when you're trying to get your pain addressed. It will only confuse the issue. Bp and hr change during times of illness. Hope you get this figured out. I had to drop two doctors because they ignored my kidney stone and severe menstrual problems. I've never regreted it. My next doctors recognized these doctors ignorance. Tc ... D

I haven't read all of this but from the first post you're describing my gall bladder pain. Pain can be refered tho so it's hard to say. I once had a kidney stone stuck right outside my kidney and had pain to the left of my belly button. No where near the stone. I'm assuming you've been to the er for this. I've found er docs to be more competent when it comes to dealing with pain. And several other areas. You just need to be calm and clear about your symptoms. I don't try to dx myself because I suck at it. Lol. Cat scans, labs, etc run when you're having these symptoms is the best way to get answers. High bp can just be from stress or pain and not connected to your problem. Fwiw, I'd change doctors too. Any doc who ignores symptoms isn't looking out for you. Hope u feel better soon. D

Hopefully anyone seeing a dr who views dysautonomia as psychological would stop seeing this doctor. Thankfully there's enough info on the internet for patients to see what a croc this is. I'm still amazed at how articles with this many errors gets published. You'd think I'd have realized by now that getting an article published doesn't mean the authors knew what they were talking about.

I just went through this here. I learned my lesson and keep the windows closed now if the pollen is up. Taking 30 mg of zyrtec spread throughout the day + 180 mg allegra at night + 1 Childrens benadryl tablet throughout the day returned my sanity. I only had to take this much for a few days until things calmed down. Then I went back to my regular mast cell dosage of 30 mg zyrtec + 1 tsp childrens benadryl at night.

Did you eat something sweet before walking the dog ? I have a tendency towards low blood sugar and used to get what you described until I learned to keep my blood sugar up when I'm exerting myself. I'm currently using dex4 glucose tablets successfully. I just take 2 as needed if I start to feel light headed. If I have pem tho, I need caffeine. Vitamin water xxx seems to be helping me lately too. Another possibility tho .. If you changed your diet and your body is now working on healing itself you can get some weird short term neuro symptoms. My forearms had a fluttering feeling in them for several weeks post diet change. Gluten was keeping my body inflamed. Tc ... D

For those of us with oh and pots I don't think we can take a drug that causes more tachycardia. I wonder why they think this drug is a good idea for those who only having problems when standing. I'm confused by all the negative comments about trying nicotene when most drugs come with strong warnings and discussing those seems to accepted here. FWIW, I'm taking an addictive drug, Klonopin, for a myoclonus / seizures and plan on staying on it. Sometimes, you just have to accept the good with the bad. thanks for the reply, nm, I'm going to watch what nicotene do to my bp more carefully. FWIW, I read that there may be some chemicals in the e cigs that we may not want in our bodies. But I'm not sure how old that info was and if it applies to all e cigs. The nicotene gum I found had a chemical, phenyl ?, in it that's not good for people with seizures. I tried taking Singulair with that chemical in it and my seizure threshold was reduced. I wound up needing Klonopin during the day to stop me from jerking. I'll be trying the patch next. tx ... D

Anyone else trying this ? I bought a pack of organic cigs and have tried 4 so far. These are affecting how I feel but I'm still working on how to define the feelings I get. I read that these increase dopamine and serotonin. If so, one cig isn't enough to significantly elevate my mood. But I read that cigs only contain 1 mg of nicotine. So far, I've only tried these when I was tired / sleepy and they don't wake me up like caffeine. My thinking feels clearer but I haven't had the chance to do a pmttt yet. The downside is the smell, inconvenience, and the smoke is drying out my sinuses too much. I'm not planning on buying a second pack. I'l try the patch next. Fwiw, for those who don't understand why someone would try this .. I've been totally disabled for 23 years now and tried diet and supplements for the last 8 years. The diet, supplements, mast cell meds and klonopin help me tremendously with other symptoms but not oi. I'm tired of waiting for a "cure" and tried the holistic route / trying to rebuild my body for 8 years. So now I've decided that I'm no longer letting my oi run my life and am I'm experimenting with a variety of things. Anyone ?

What do you mean by symptomatic ? What symptoms are you having ? Fwiw, my feelings of oi, low blood to the brain/petite mals usually, tachycardia and trouble breathing, match up to my pmttt. I was thinking maybe it's because I have a left bundle branch block and my heart can't keep up if I'm upright. I can't exercise because of this. Maybe that's the difference ? Meaning if there's a chronic heart condition that always interfers with functionality pmttts will always corelate.

Sounds like it could be nocturnal myoclonus. I was dx with this via a sleep study test in early 1990s. Mine are too severe not to treat. Luckily my dr realized this from my test. I use klonopin. I went off klonopin for about 5 years because I discovered my myoclonus was better if I avoided gluten. I used theanine if needed. I just realized last year that myoclonus was still keeping me from getting a good nites sleep even if it wasn't bad enough to completely wake me up. I'm waking up feeling completely rested as long as I take klonopin. Tc ... D

I have Hashimoto's but normal thyroid levels. Go figure. I tried tyrosine but didn't notice any effects. But, I noticed that I feel an energy boost if I take DLPA (pre-cursor for tyrosine) and tyrosine together. BUT the boost only lasts for the first couple of days and then stops. Subsequent doses or higher doses never made a difference. Neither DLPA or tyrosine worked alone for me but worked together. I used Solgar brand. tc ... d

Hi issie, I tried vegan minus my food intolerances for 6 weeks (no or very little meat, dairy, gluten, corn, soy, or chemicals) just veggies, grains and legumes, but never felt well. I'm not eating great right now but I've had company or been company for about a month so it's impossible to keep healthy foods available. Grains and legumes in the healthy form and not so healthy form are putting weight on me. The paleo diet was great for me weight wise but I still needed a source of sugar for my neuroglycopenia. I just switched to using sugar in Jan. I was using oranges (now allergic to citrus) or raisins mostly. And coffee with sugar in a pinch. My body never adjusted to using foods for this problem. My symptoms respond to what a diabetic would need for a hypoglycemic crisis. Just to be clear ... ... if I want to go for a walk on the beach and be able to think, I need to eat something to raise my blood glucose immediately before and about every 15 minutes afterwards. Stopping and resting for 5 - 10 minutes every 15 minutes and eating something sweet works best. I've been doing this for several years now. This is what I have to do in order to function when running errands too. tc .. d

Here's that thread on neuroglycopenia .. d http://forums.phoenixrising.me/index.php?threads/neuroglycopenia-low-blood-glucose-in-the-brain.22793/

I think my neuroglycopenia is constant regardless of my serum blood glucose level that shows up when tested. The dr in the first article I quoted on that pr thread said that measuring glucose via blood isn't sufficient to tell what our glucose levels are in all parts of the body at a given time. He said that glucose needs change in certain parts of the body based on need. I'm sure he explained it better than I just did ... lol ... I think my brain isn't getting all it needs while the rest of my body is ok. The brain uses a lot of glucose. I have hyperinsulinemia too but found out that eating a little more sugar regularly for several months stopped me from reacting so harsh. My body ajusted to it. I couldn't eat a whole orange at one time when I started but was up to a whole one easily with a couple of months. I've put on weight in the last 4 months since I stopped the paleo diet and started eating grains and legumes. And waay too many sweets. These tablets only have 4 calories per tablet. The reason they work is because it's absorbed quickly. I only take 1 or 2 at a time. I'm not sure why they work so well on my brain. Other than the obvious reason that they dissolve in the mouth. tc ... d

Sue, Did you get extensive nutrient testing ? As in e, chromium, etc etc. Not the typical ones most doctors order. Have you looked at neuroglycopenia ? Low blood glucose in the brain. I've been using dex 4 glucose tablets for about a month now and they're helping me tremendously. I only take one or two at a time but take them freely. I'm hoping that within time the additional glucose in my brain will help my oi. It's an obvious problem for me. I've been treating this with oj, raisins or tiny bit of coffee with a ton of sugar and not knowing what it was for 6 years now. I started at thread on phoenix rising about this. Just search on neuroglycopenia. There is info in that thread about isf (interstitial fluid) that I want to research further. Isf contains glucose, amino acids, sodium, etc. Tc .. D

I wasn't tested for nutritional deficiencies until 3 years post gf diet and 2 years post gluten ataxia. My regular traditional gps didn't pursue this only my integrative doctor did. Duh ! At that point I was low on b12, chromium, e, d and whatever healthy fats have (sorry I can't remember right now). Recent cdsa shows I'm still low on good bacteria, elastace and healthy fats. I'm taking creon now to see if that helps. I'd look at dr hadjivassilou's info to see if he knows what nutrients are involved. Fwiw, I loaded up on brain foods 6 months to a year after I started my healing process in 2005. I was too sick the first 9 months with what I was told was full blown celiac disease. I was sensitive to most food and it all hurt going down. Fwiw, my body over produces antibodies to gluten. Small amounts of cross contamination result in a high antibody level in the stool test. My serum test didn't show antibodies when my stool test did. These tests aren't looking for the exact same antibodies tho. I get a little ataxia back with cc. I just walk like I'm a little drunk now when before I was all over the place. I also get insomnia and myoclonus. A combo of Klonopin, 5htp and melatonin completely reverse my sleep disorder symptoms within 30 minutes now.. Yay ! Kow. My dr used to tell me not to worry about not sleeping at night for days on end. Eventually I'd sleep. Lol. Go google ! Tc ... D