If I can keep my inflammation under control I'm always in a better place. I don't take any prescription drugs.
I do take Chelorex ( a herbal chelator) (Scintific Formulas.com) that is the best way to control burning, Alpha Lipoic Acid, Omega 3's fish oil, Vitamin E with selnium, Turmeric, and B Complex and multi-vitamin. All of which are organic and of the highest quality!
I don't always take all of them at the same time but the absolute best one is the Chelorex. It has MSM, Alpha Lipoic acid, Cilantro and some other things in a proprietary formula. when I first started taking these I did a hair analysis and had 12x the safe amount of lead in my system. After a year I had 6x and I'm curious to test it again.
I think I have a lot of heavy metal poisoning in my system as well as mercury in my fillings.
I definitely cannot drink alcohol anymore. I miss my glass of wine and if I have it I get an immediate flair just as a reminder!
Stay cool!
Tullilou, that's so interesting - I stopped sweating a couple of years ago (probably around the same time as the EM was getting going) and I really miss it! I might ask my doctor if she would prescribe Mestinon and see if it helps. What dose are you on? Is there any other name for it, as I am in the UK and it may be called something different over here.
Congratulations on finding something that works!
FrancesE
Tullilou said:
A little over a month ago, I was diagnosed with postural orthostatic tachycardia (which is a disautonomia) and was placed on Mestinon to help regulate my sympathetic nervous system and lower my heart rate. The dr. hoped that treating the POTS would also help the EM, since both involve circulation.
The Mestinon is helping a ton, mostly because I am now able to sweat. Now I realize that I probably stopped sweating when I developed the EM, and so my body couldn't cool itself, especially my feet. You have no idea how great it feels to sweat until you've gone without! I still have occasional EM flares, but I am so much more heat tolerant than I used to be. I wonder if other EMers have stopped sweating?
I take 60mg x twice a day. The generic name is pyridostigmine. It’s usually prescribed for myesthenia gravis, but is used off-label for POTS. Sweating is actually a side effect, but boy is life more pleasant now that my skin actually sweats!! I hope your doctor is able to prescribe it or something similar for you.
FrancesE said:
Tullilou, that's so interesting - I stopped sweating a couple of years ago (probably around the same time as the EM was getting going) and I really miss it! I might ask my doctor if she would prescribe Mestinon and see if it helps. What dose are you on? Is there any other name for it, as I am in the UK and it may be called something different over here.
Congratulations on finding something that works!
FrancesE
Tullilou said:
A little over a month ago, I was diagnosed with postural orthostatic tachycardia (which is a disautonomia) and was placed on Mestinon to help regulate my sympathetic nervous system and lower my heart rate. The dr. hoped that treating the POTS would also help the EM, since both involve circulation.
The Mestinon is helping a ton, mostly because I am now able to sweat. Now I realize that I probably stopped sweating when I developed the EM, and so my body couldn't cool itself, especially my feet. You have no idea how great it feels to sweat until you've gone without! I still have occasional EM flares, but I am so much more heat tolerant than I used to be. I wonder if other EMers have stopped sweating?
Tullilou. I don't think I have POTS but I have one weird symptom which is that when I get up in the morning I have a huge flare-up - as if all the blood has rushed down to my feet and my right knee (where I get the EM symptoms) and doesn't leave. Is that a POTS-type symptom? It doesn't happen at other times of the day, just first thing. I get other flare-ups later but they seem more related to heat, exercise etc.
All the best
Frances
Tullilou said:
I take 60mg x twice a day. The generic name is pyridostigmine. It's usually prescribed for myesthenia gravis, but is used off-label for POTS. Sweating is actually a side effect, but boy is life more pleasant now that my skin actually sweats!! I hope your doctor is able to prescribe it or something similar for you.
FrancesE said:
Tullilou, that's so interesting - I stopped sweating a couple of years ago (probably around the same time as the EM was getting going) and I really miss it! I might ask my doctor if she would prescribe Mestinon and see if it helps. What dose are you on? Is there any other name for it, as I am in the UK and it may be called something different over here.
Congratulations on finding something that works!
FrancesE
Tullilou said:
A little over a month ago, I was diagnosed with postural orthostatic tachycardia (which is a disautonomia) and was placed on Mestinon to help regulate my sympathetic nervous system and lower my heart rate. The dr. hoped that treating the POTS would also help the EM, since both involve circulation.
The Mestinon is helping a ton, mostly because I am now able to sweat. Now I realize that I probably stopped sweating when I developed the EM, and so my body couldn't cool itself, especially my feet. You have no idea how great it feels to sweat until you've gone without! I still have occasional EM flares, but I am so much more heat tolerant than I used to be. I wonder if other EMers have stopped sweating?
Hi Francis,
I have swollen hands and feet each morning, but I don’t think that’s a POTS symptom, though who knows if it’s related. Both EM and POTS are related to circulation, but I’m not sure how they overlap or affect each other. I just know that treating the POTS, and especially being able to sweat, helps my EM.
FrancesE said:
Tullilou. I don't think I have POTS but I have one weird symptom which is that when I get up in the morning I have a huge flare-up - as if all the blood has rushed down to my feet and my right knee (where I get the EM symptoms) and doesn't leave. Is that a POTS-type symptom? It doesn't happen at other times of the day, just first thing. I get other flare-ups later but they seem more related to heat, exercise etc.
All the best
Frances
Tullilou said:
I take 60mg x twice a day. The generic name is pyridostigmine. It's usually prescribed for myesthenia gravis, but is used off-label for POTS. Sweating is actually a side effect, but boy is life more pleasant now that my skin actually sweats!! I hope your doctor is able to prescribe it or something similar for you.
FrancesE said:
Tullilou, that's so interesting - I stopped sweating a couple of years ago (probably around the same time as the EM was getting going) and I really miss it! I might ask my doctor if she would prescribe Mestinon and see if it helps. What dose are you on? Is there any other name for it, as I am in the UK and it may be called something different over here.
Congratulations on finding something that works!
FrancesE
Tullilou said:
A little over a month ago, I was diagnosed with postural orthostatic tachycardia (which is a disautonomia) and was placed on Mestinon to help regulate my sympathetic nervous system and lower my heart rate. The dr. hoped that treating the POTS would also help the EM, since both involve circulation.
The Mestinon is helping a ton, mostly because I am now able to sweat. Now I realize that I probably stopped sweating when I developed the EM, and so my body couldn't cool itself, especially my feet. You have no idea how great it feels to sweat until you've gone without! I still have occasional EM flares, but I am so much more heat tolerant than I used to be. I wonder if other EMers have stopped sweating?
Frances, I think POTS often causes swelling or blood pooling in the hands and feet. If you google combinations of terms like "POTS swollen swelling hands feet" you'll see messages on POTS or EDS message boards about it. Some specifically mention they have the problem when they first get up in the morning. I think maybe there are also other forms of Dysautonomia, similar to POTS, that can cause it too. I know I have some form but haven't seen an expert for diagnosis yet. They are hard to find.
Thanks Kentuckian! It is hard to figure out what's related to what. Perhaps my EM symptoms are all part of the POTS. Perhaps my episodes of severe sciatic pain (with abdominal pain) are somehow related too. My mother has Acute Intermittent Porphyria, and I read on the DINET site that that is one of the possible causes of Dysautonomia. Just one more thing for me to research.
Kentuckian said:
Frances, I think POTS often causes swelling or blood pooling in the hands and feet. If you google combinations of terms like "POTS swollen swelling hands feet" you'll see messages on POTS or EDS message boards about it. Some specifically mention they have the problem when they first get up in the morning. I think maybe there are also other forms of Dysautonomia, similar to POTS, that can cause it too. I know I have some form but haven't seen an expert for diagnosis yet. They are hard to find.
Tillulou,
Porphyria can also cause EM. Have you been tested? I was tested for Fabry Disease and AIP years ago and was negative. For me the problem seems to be my inherited connective tissue disorder and associated dysautonomia and mast cell activation problem, but the geneticist who figured it out was glad I'd had those other tests before seeing her. I know getting tested for AIP isn't easy (although it should be) because most labs don't handle the specimens right and ruin them before they get to the Porphyria lab. At least the tests were reasonably cheap. In order to use a lab that knew how to handle the specimens I had to pay out of pocket. LabCorps here kept messing up the 24-hr urine collection specimens.
Your family sounds as complicated as mine!
Tullilou said:
Thanks Kentuckian! It is hard to figure out what's related to what. Perhaps my EM symptoms are all part of the POTS. Perhaps my episodes of severe sciatic pain (with abdominal pain) are somehow related too. My mother has Acute Intermittent Porphyria, and I read on the DINET site that that is one of the possible causes of Dysautonomia. Just one more thing for me to research.
Kentuckian said:
Frances, I think POTS often causes swelling or blood pooling in the hands and feet. If you google combinations of terms like "POTS swollen swelling hands feet" you'll see messages on POTS or EDS message boards about it. Some specifically mention they have the problem when they first get up in the morning. I think maybe there are also other forms of Dysautonomia, similar to POTS, that can cause it too. I know I have some form but haven't seen an expert for diagnosis yet. They are hard to find.
Hi Kentuckian,
My previous neurologist did order the test for AIP, but it wasn't a 24 hour urine test, just a plain pee in a cup and send it in test through LabCorp. Of course, it came back negative. I've done some research since and learned that that test was no good. I plan to ask the neurologist at Johns Hopkins to contact one of the preferred labs (that have a porphyria expert there) for instructions and then do the test right. I am glad to know that it isn't expensive, since that was a worry of mine.
Kentuckian said:
Tillulou,
Porphyria can also cause EM. Have you been tested? I was tested for Fabry Disease and AIP years ago and was negative. For me the problem seems to be my inherited connective tissue disorder and associated dysautonomia and mast cell activation problem, but the geneticist who figured it out was glad I'd had those other tests before seeing her. I know getting tested for AIP isn't easy (although it should be) because most labs don't handle the specimens right and ruin them before they get to the Porphyria lab. At least the tests were reasonably cheap. In order to use a lab that knew how to handle the specimens I had to pay out of pocket. LabCorps here kept messing up the 24-hr urine collection specimens.
Your family sounds as complicated as mine!
Tullilou said:
Thanks Kentuckian! It is hard to figure out what's related to what. Perhaps my EM symptoms are all part of the POTS. Perhaps my episodes of severe sciatic pain (with abdominal pain) are somehow related too. My mother has Acute Intermittent Porphyria, and I read on the DINET site that that is one of the possible causes of Dysautonomia. Just one more thing for me to research.
Kentuckian said:
Frances, I think POTS often causes swelling or blood pooling in the hands and feet. If you google combinations of terms like "POTS swollen swelling hands feet" you'll see messages on POTS or EDS message boards about it. Some specifically mention they have the problem when they first get up in the morning. I think maybe there are also other forms of Dysautonomia, similar to POTS, that can cause it too. I know I have some form but haven't seen an expert for diagnosis yet. They are hard to find.
Yes, I have stopped sweating too- Knew it years ago, but the Mayo sweat test confirmed. ~~
FrancesE said:
Tullilou, that's so interesting - I stopped sweating a couple of years ago (probably around the same time as the EM was getting going) and I really miss it! I might ask my doctor if she would prescribe Mestinon and see if it helps. What dose are you on? Is there any other name for it, as I am in the UK and it may be called something different over here.
Congratulations on finding something that works!
FrancesE
Tullilou said:
A little over a month ago, I was diagnosed with postural orthostatic tachycardia (which is a disautonomia) and was placed on Mestinon to help regulate my sympathetic nervous system and lower my heart rate. The dr. hoped that treating the POTS would also help the EM, since both involve circulation.
The Mestinon is helping a ton, mostly because I am now able to sweat. Now I realize that I probably stopped sweating when I developed the EM, and so my body couldn't cool itself, especially my feet. You have no idea how great it feels to sweat until you've gone without! I still have occasional EM flares, but I am so much more heat tolerant than I used to be. I wonder if other EMers have stopped sweating?
My test was a couple of years ago and cost me around $260. I was amazed. I don't know if it's always so cheap or I just got lucky somehow. The lab I used locally (in VA) sent the specimen to the Porphyria lab in Utah and did the correct way to preserve it, unlike LabCorps.
Tullilou said:
Hi Kentuckian,
My previous neurologist did order the test for AIP, but it wasn't a 24 hour urine ...
I wonder if I could still get that deal. Medical costs have really gone up lately. I will hope!
Kentuckian said:
My test was a couple of years ago and cost me around $260. I was amazed. I don’t know if it’s always so cheap or I just got lucky somehow. The lab I used locally (in VA) sent the specimen to the Porphyria lab in Utah and did the correct way to preserve it, unlike LabCorps.
Tullilou said:
Hi Kentuckian,
My previous neurologist did order the test for AIP, but it wasn’t a 24 hour urine …