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basktbal22

Flushing (And My Partial-Success Story)

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Hi all,

It has been quite a ride for me to become diagnosed with POTS. I was a healthy 20 year old male in college, when all of the sudden I began having some extreme flushing episodes. These episodes drove me to the doctor's office, where they were quick to order numerous blood tests. Long story short, my serotonin levels were slightly high, and after a CT scan a 'tumor' was found in my chest- thus I was recommended for surgery, under the suspicion of carcinoid/carcinoid syndrome. The surgery went well and the tumor turned out to be benign- in fact, there was no tumor, but rather just an abnormally shaped thymus gland! So essentially the surgery was pointless, but on a brighter note I did not have cancer. After surgery a more subsequent work-up was done for my symptoms and it was found that my heart rate increased upon standing by about 38 bpm, thus POTS was diagnosed. By this time my symptoms were so severe that I had dropped out of college.

Recently, I have returned to college, and am doing okay (aside from intense flushing, described below). POTS-wise, my symptoms have greatly subsided, as has my standing heart rate. It is strange that in the past few months I have become better so quickly. I hope this is not simply a period of temporary remission as posted in earlier forum topics. I should note that in my case of POTS my blood pressure does not drop significantly. After trialing many drugs, I have come to realize that I get the best relief (and greatest reduction in HR)is achieved by supplementing with sea salt, the correct exercise techniques, and of course water. I find that my body better 'absorbs' the sea salt when I mix it in with water or orange juice/milk/gatorade. I had supplemented with salt before (by eating high-salt foods) and found no relief, yet when I mix it in with water I am better both subjectively (symptoms) and objectively (reduction in HR. I also get the same effect with thermotabs, which are simply buffered salt tabs.

In terms of exercise, I have found a recumbent bike to serve my needs greatly. I try to get in 25-30 minutes on the recumbent while keeping my HR under 150. I also work out alot (as I did prior to diagnosis), and have been building my leg muscles to how they were pre-POTS. I do a lot of calf work and squats/other leg exercises with weights twice weekly. Funny enough, when I started to get my POTS symptoms, my leg muscles simply atrophied- for no apparent reason. I was working out and carrying on with my normal routine, but my leg muscles kept getting smaller, and my squat max went from 275 to 145 in a matter of a month- without reason! The atrophy is proven by a serum blood test of CPK, or creatine phosphokinase (sp?), which was elevated at the time but has since dropped. Recently I have been gaining strength back, which is something I could not do before.

Through these practices (sea salt w/ liquid, correct exercises, and water) I have been able to get my standing HR down from 110 to usually in the 90's, sometimes as low as 70's. I have been able to return to school and lead a fairly normal life. However, there is still one terrible symptom: the FLUSHING (a burning, hurting kind of flush)!

My flushing has been worse and worse since the onset of my symptoms. I have been tested for mastocytosis (numerous times, with all different methylhistamine, tryptase, etc), carcinoid syndrome (still have slightly elevated serotonin, but all other numbers normal, including 5HIAA and negative scans/octreotide scan), pheochromocytoma, etc. Nobody seems to be able to figure out the flushing. Any thing I do, I mean anything, brings it on. It has actually become a painful experience, primarily b/c of the burning that the flushing induces. I know there are numerous posts regarding flushing, but has anyone found relief yet? I trialed a large antihistamine regimen, but it did not help, just dried me out (and tests negative for masto). I have also tried beta-blockers, but they did not help and made my POTS symptoms worse. I would be interested in hearing if anyone has had relief in regards to the flushing. I have been following these forums for a while- just never posted, thanks for any input.

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Welcome Jay,

I read your story to my husband, who is really into exercise and knows allot about the body and how it works. He wondered if when you started noticing that you were getting weaker and losing strength - Did you exercise even more? He said he has seen this happen with people so many times. They over exercise and actually cause muscle wasting. I told him, I doubted that would be the case, with POTS - but it was the only reason he could think of.

Don't know about the flushing. One thing that will cause me to do it - is a food allergy. There are certain things that will cause me to have the flush. Hormones will do it too. Have you had your hormones checked? Guys can have issues with imbalances in that too. When I have the food allergy thing happen - I'll take a B-100 complex and a Vitamin C. In about 20 minutes I'll feel better. If that doesn't work, I'll take a Claritin and a Tagament. I try the vitamins first. Another good thing for allergies is Quercetin. I have recently read that they are connecting a low Vitamin D level to allergies too.

That's about all that comes to mind - right now.

I'm so glad you are doing better with your heart rate. That is wonderful. I plan to start the sea salt or himalayan salt myself and not do the G2's so much. I'm thinking minerals in the salt will make a difference with hydration.

Issie

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Issie- thanks for the response and for your information regarding food allergies. I have been very careful with my food types, especially in terms of msg and tyramine, but have had little success with pinpointing any foods I could be sensitive to (keeping a food diary and all). I still think that food may play a role in my flushing and continue to keep this food diary, while eliminating msg/processed foods, as many on the forum have reported them to worsen their symptoms.

You are correct- I was not overdoing exercise at the time, but rather sticking to my regular routine (when I lost the strength in my legs). This was a good thought on your husband's part though, and I'm glad you brought it up. I am very happy to be gaining this muscle back, and truly believe it has helped me improve my heart rate and symptoms. Some doctors will compare your muscles to being a second heart, as they pump your blood nearly as much as your heart does. I was practically bed-ridden just a few months ago and was considering a wheel-chair to return to school, but now that will not be necessary! I found that the recumbent bike and taking long walks has been highly beneficial, along with the weight lifting. I used to try to run- but this was bad, as my heart rate would rise too fast and my body would crash afterwards. I know my problem is not a 'deconditioned heart' (as Dr. Levine believes is the cause of POTS), as I have had echocardiograms and it is slightly enlarged, which was blamed on the athlete aspect of my past.

I forgot to post in my last message, the flushing is strictly upper body, meaning chest, shoulders, neck and face.

It's interesting that B-complex would help with your flushing. I have had many many hormones checked, including B-vitamin levels (specifically B-12), which have been normal. If the B-complex helps you I suppose you can conclude your flushing is NOT due to niacin (B-vitamin known to dilate and cause flushing).

In terms of salt- I have experienced a HUGE difference between normal salt and sea salt. This has been discussed in many other posts, so I won't go into the theories of why. Thanks for the post and I hope sea salt/himalayan salt works out for you.

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Hey, As far as i know Octreotide (Sandostatin) is a good treatment for both POTs and treats Sever Flushing as a side effect. all the best with college, Jonathan ;)

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pinpointing any foods I could be sensitive to (keeping a food diary and all). I still think that food may play a role in my flushing and continue to keep this food diary, while eliminating msg/processed foods

I have had many many hormones checked, including B-vitamin levels (specifically B-12), which have been normal. If the B-complex helps you I suppose you can conclude your flushing is NOT due to niacin (B-vitamin known to dilate and cause flushing).

In terms of salt- I have experienced a HUGE difference between normal salt and sea salt. This has been discussed in many other posts, so I won't go into the theories of why. Thanks for the post and I hope sea salt/himalayan salt works out for you.

Sometimes, it's hard to figure out the allergies. It could even be something in a vitamin - like a filler. If you're allergic to msg. you could also have a soy allergy. Is soy oil in your fish oil? See what I mean. There are so many foods in certain families. If you are sensitive to one thing in a family, you could be sensitive to all of them.

As for B vitamins. I can't take niacin at all. I can only take niacinimide. I do have an allergic reaction to niacin. The best B-Complex I've found that doesn't make me sick is Nature Made. I know this is a cheap one, but it works for me. I think it may be a time released one.

What did you find with salt. I'm the one that brought up the subject of the more natural salts. So, this subject intrigues me.

I'm glad you got your strength back in your legs. I'm working on this too. I've been in a chair for 4 months. It doesn't make you get stronger. If anything - I've gotten alot weaker and my POTS is worse than ever. I'm hoping to only use the chair for shopping - in the future. I'm finding pool exercises to be a wonderful thing for me. It doesn't hurt me POTS wise - but I am getting sore from the exercise. Hoping for strength - real soon.

As for your flushing - have you had all the sex hormones checked. Not just hormones from glands. If the sex hormones get out of balance - that can cause flushing too. But, also POTS itself can cause the flushing - with adrenal surges. Did they check your noriephi?

Issie

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Hi all,

It has been quite a ride for me to become diagnosed with POTS. I was a healthy 20 year old male in college, when all of the sudden I began having some extreme flushing episodes. These episodes drove me to the doctor's office, where they were quick to order numerous blood tests. Long story short, my serotonin levels were slightly high, and after a CT scan a 'tumor' was found in my chest- thus I was recommended for surgery, under the suspicion of carcinoid/carcinoid syndrome. The surgery went well and the tumor turned out to be benign- in fact, there was no tumor, but rather just an abnormally shaped thymus gland! So essentially the surgery was pointless, but on a brighter note I did not have cancer. After surgery a more subsequent work-up was done for my symptoms and it was found that my heart rate increased upon standing by about 38 bpm, thus POTS was diagnosed. By this time my symptoms were so severe that I had dropped out of college.

Recently, I have returned to college, and am doing okay (aside from intense flushing, described below). POTS-wise, my symptoms have greatly subsided, as has my standing heart rate. It is strange that in the past few months I have become better so quickly. I hope this is not simply a period of temporary remission as posted in earlier forum topics. I should note that in my case of POTS my blood pressure does not drop significantly. After trialing many drugs, I have come to realize that I get the best relief (and greatest reduction in HR)is achieved by supplementing with sea salt, the correct exercise techniques, and of course water. I find that my body better 'absorbs' the sea salt when I mix it in with water or orange juice/milk/gatorade. I had supplemented with salt before (by eating high-salt foods) and found no relief, yet when I mix it in with water I am better both subjectively (symptoms) and objectively (reduction in HR. I also get the same effect with thermotabs, which are simply buffered salt tabs.

In terms of exercise, I have found a recumbent bike to serve my needs greatly. I try to get in 25-30 minutes on the recumbent while keeping my HR under 150. I also work out alot (as I did prior to diagnosis), and have been building my leg muscles to how they were pre-POTS. I do a lot of calf work and squats/other leg exercises with weights twice weekly. Funny enough, when I started to get my POTS symptoms, my leg muscles simply atrophied- for no apparent reason. I was working out and carrying on with my normal routine, but my leg muscles kept getting smaller, and my squat max went from 275 to 145 in a matter of a month- without reason! The atrophy is proven by a serum blood test of CPK, or creatine phosphokinase (sp?), which was elevated at the time but has since dropped. Recently I have been gaining strength back, which is something I could not do before.

Through these practices (sea salt w/ liquid, correct exercises, and water) I have been able to get my standing HR down from 110 to usually in the 90's, sometimes as low as 70's. I have been able to return to school and lead a fairly normal life. However, there is still one terrible symptom: the FLUSHING (a burning, hurting kind of flush)!

My flushing has been worse and worse since the onset of my symptoms. I have been tested for mastocytosis (numerous times, with all different methylhistamine, tryptase, etc), carcinoid syndrome (still have slightly elevated serotonin, but all other numbers normal, including 5HIAA and negative scans/octreotide scan), pheochromocytoma, etc. Nobody seems to be able to figure out the flushing. Any thing I do, I mean anything, brings it on. It has actually become a painful experience, primarily b/c of the burning that the flushing induces. I know there are numerous posts regarding flushing, but has anyone found relief yet? I trialed a large antihistamine regimen, but it did not help, just dried me out (and tests negative for masto). I have also tried beta-blockers, but they did not help and made my POTS symptoms worse. I would be interested in hearing if anyone has had relief in regards to the flushing. I have been following these forums for a while- just never posted, thanks for any input.

Hi Jay-

Wow, you've certainly been through a lot with your carcinoid scare and subsequent continued symptoms :( . I'm a flusher and I HAVE found relief. I hear that your docs have ruled out mastocytosis, but have they considered Mast Cell Activation Syndrome/Disorder (MCAS/MCAD)? In mastocytosis, the patient has too many mast cells. In MCAS/MCAD, the patient has a normal number of mast cells, they are simply over-reactive. Go to The Mastocytosis Society Website to learn more. Click on the PDF document "More about masto" under the heading "What is Mastocytosis:" http://www.tmsforacure.org/

You can have normal serum tryptase levels and normal blood & urine methylhistamine levels and still have MCAS/MCAD. In a MCAS/MCAD patient, the levels are usually only elevated following a flushing episode. Depending on when the tests were taken, and what your body was doing at the time, they can be inconclusive.

You say you've tried antihistamines w/o relief. BUT, have you tried combining an H-1 (zyrtec, claritin, allegra) WITH an H-2 (ranitidine, zantac) and an anti-leuketreine (singulair)? This combo bring relief to many who've not had success (or limited success) with antihistamines alone. You can even try the H-1 and H-2 w/o the singulair. Many find relief with just those two. They are both OTC and basically benign. Many ANS docs are recommending a trial combo w/o abnormal labs.

One last recommendation: GREEN TEA. I drink it all day long. I simply steep 7 organic green tea bags in a gallon of purified drinking water- in the fridge. Takes less than 1 minute to make & you have a healthy beverage to enjoy all day. Green tea has quercetin, natural antihistamine & anti-inflammatory properties: http://findarticles.com/p/articles/mi_m0FKA/is_n4_v60/ai_20471626/ There is a noticeable difference in my symptoms on days that I don't drink it.

I commend you for taking your health into your own hands. You are an admirable young man to work so hard to overcome your illness. Congrats for getting back to school- I know that's a struggle. I have a 17 year old son, starting college next year, with very similar health issues. The H-1 & H-2 have made a huge difference for both of us.

Best of Luck-

Julie

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jonathonireland- Good catch with the octreotide. My serotonin levels have been slightly elevated, but doc's typically say it is insignificant. If the serotonin were the cause of my flushing, octreotide would help greatly (octreotide is also a treatment for flushing/diarrhea seen with carcinoid syndrome, which causes high serotonin levels). I actually tried octreotide and had some strange sort of reaction, so the doc pulled me off of it. Octreotide should help you with hypotension- but then again, so would other drugs.

Issie- thanks for the points regarding food allergies, I had never given it that much in-depth thought, and am glad you bring this up. In regards to the salt, it simply comes down to which types of salt have not been processed (sea salt and himalayan). These salts contain more minerals and trace elements, which- as you said, are eliminated by the processing of normal salt products. Whether or not these are significant are up to debate- but in my case, I have found them to be significant. I am also looking into trying himalayan salt. For me, adding salt to my diet was not enough. In fact it made little difference. I started noticing a difference in HR/symptoms (perhaps coincidentally, but I don't think so) when I began mixing the sea salt with water/orange juice/gatorade. I usually mix 1/4th a tsp, twice daily, to give me an extra 1200mg of sodium daily. I keep up with salt in my diet, take 2-4 thermotabs (each tab has 180mg sodium), and drink plenty of water. Of note, I also take a potassium supplement because my potassium levels were borderline low (3.9). My theory of why I benefit from taking the salt with liquid is that it is more easily absorbed by the body, but this is just a guess. My last urinary sodium levels were only at 170 (normal range: 150-220) despite consuming large amounts of salt. Issie, I hope you can gain your leg strength back as well. I have had my sex hormones checked a few times- because the first time they were out of balance for a male my age, but have since normalized. My norepinephrine has been slighlty elevated at times, but normal at others. I tried a few beta blockers but couldn't handle them due to horrific fatigue. Based on your suggestions, I am going to amp up my details with my food log, and look into 'small' things like vitamin fillings and what not, thanks for the suggestion.

Mack's Mom- I have read a number of your postings in the past, and really did wonder if I could be experiencing MCAD. My blood work has been all done after flushing episodes, but my urinary methylhistamines have all been 24hr. The only thing that really showed up in testing was a high Ige level (104), probably due to a cat allergy I had when I lived back home earlier. But the flushing began before I moved back home, thus the cat allergy is not likely the cause of it. I have tried combining the H1/H2 but did not notice any significant reduction in flushing- how long did it take before you noticed a reduction? I am now considering re-trying this, for a longer time frame, as I already have the supplies, and don't experience any real side effects from allegra/ranitidine. Thanks for this info. Green tea is interesting- I am definitely going to try this. I am glad the H1 and H2 have worked out for you and your son-- how much of a role do you think the singulair played? And how long did it take for singulair to work? Thanks for the info, it is much appreciated.

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"Mack's Mom- I have read a number of your postings in the past, and really did wonder if I could be experiencing MCAD. My blood work has been all done after flushing episodes, but my urinary methylhistamines have all been 24hr. The only thing that really showed up in testing was a high Ige level (104), probably due to a cat allergy I had when I lived back home earlier. But the flushing began before I moved back home, thus the cat allergy is not likely the cause of it. I have tried combining the H1/H2 but did not notice any significant reduction in flushing- how long did it take before you noticed a reduction? I am now considering re-trying this, for a longer time frame, as I already have the supplies, and don't experience any real side effects from allegra/ranitidine. Thanks for this info. Green tea is interesting- I am definitely going to try this. I am glad the H1 and H2 have worked out for you and your son-- how much of a role do you think the singulair played? And how long did it take for singulair to work? Thanks for the info, it is much appreciated."

______________________________________________________________________

Hi jay-

The high IgE level is probably more indicative of a traditional allergy. I hear that you weren't around cats (your known allergy), but maybe there's another allergen that's not been identified that you were exposed to.

Hmmm, Your blood work was done after flushing...probably accurate. I bet they checked serum tryptase & methylhistamine, at least I hope so. A 4-hour urinary methylhistamine after a flushing episode would probably be a good idea.

I had to really up my H-1's before my symptoms were stabilized, but they were much more severe than what you are describing- including anaphylactoid episodes. Once I got that level, right- my symptoms were reversed pretty quickly. As far as singulair, I added that when I had chest pain upon breathing in and got relief within 10-15 minutes. I am NOT suggesting a higher level of H-1's for you. I would only consider that if you received SOME benefit with lower doses.

Do you just flush? Or is your flushing accompanied by other symptoms- increased HR, lightheadedness, etc. or a combo of both? I have had JUST flushing. I once was looking in the mirror and saw a bright red horizontal line move down my body, starting at my head and moving straight down- weird :blink: I waited for a high HR and all of the rest of the symptoms that accompany an episode for me & they didn't come. Other times, my flushing is accompanied by more severe autonomic & allergy-type symptoms.

What sets off your flushing? Have you considered rosecea? I think Issie might be on to something with food allergies- which would also worsen your autonomic symptoms...

Sorry to not be of more help :( . Let us know your progress if you decided to trial anything new.

I still LOVE your proactive position about your health. As a Mama, I think you rock :P Keep up the great work.

Julie

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Mack's mom- thanks for the compliments. I have come to realize how important one's health really is, which is something I had taken for granted prior to being diagnosed with POTS.

Yes, tryptase was checked after flushing, but I'm not sure about methylhistamine (blood). I think the methylhistamines have only been checked with 24 hour urines. I wanted a 4 hour urine after flushing, but my labs were unable to do this test. Does your blood tryptase become elevated after a flushing episode? My doctor was in contact with Dr. Robertson at Vanderbilt, and he also suggested the H1/H2 combo a while back, despite my negative test results. My flushing is strictly on my upper body, with what is essentially a cut-off line on the middle of my chest. I typically only get the flushing, as you described. I've never had hives or any anaphylactic episodes. Rosacea has been considered, but every doctor I have seen has said it wasn't this. though over time prolonged flushing episodes can lead to rosacea. I have already been getting a good amount of skin damage from the flushing, so if it continues I will develop rosacea. My flushing occurs primarily on my neck and chest, with some on my face. It can burn pretty badly and my skin gets hot, but no sweating is present (thus the neurologist thinks it's not neurological). It is brought on by exercise, eating, concentrating (as in school...), talking, heat, sunlight, emotion, ...anything really, and sometimes it is just spontaneous.

All of the comments have been of help, so thank you. I already take H1 antihistamines so have added an H2, which I will do twice daily for a week. Do you notice a difference in regards to the type of H1 antihistamine you take? I have allegra and zyrtec. It can't hurt to start the H2 (I get no side effects from H2, at least short term), plus I have a couple of Dr. Appts next week. I am also continuing with the food diary and upping the anty on this. Any other suggestions are welcome. Thanks again.

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A little more on food allergies and hormones. My husband, being the body conscious, weight lifter type that he is - was drinking Ensure for more protein. He started feeling really bad and couldn't figure out why. He was also putting flax meal into the ensure. Ensure protein is soy - soy has estrogenic properties and so does flax. Sure enough test. levels were too low. Stopped the soy and flax - back to healthy and happy again. Also, soy has a natural msg property in it - it's just is part of the chemical component of it. (Just another thought.) It may be the levels between the hormones that could be off. Is the ratio of estrodiol to test off. Then there is also the progesterone levels to consider too. These can be affected by the foods we eat.

Issie

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Another aspect I have been contemplating is whether or not niacin, in the food form (not taken as a supplement) can cause flushing? This has been hard to find any research on, and it was actually suggested by an allergist whom responded to my doctors question regarding the causes of hot, dry flushing. My doctor's suggestion was to take aspirin, uncoated, at 325mg once a day (which I do occasionally anyways, to dim the pain of the burning flushing-not sure if it helps though. I plan to keep a 'flushing log' and try this out as well. Has anyone ever heard of a niacin flush caused from the niacin present in food sources? Is this in fact possible? Thanks again for all the suggestions, I appreciate them.

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Niacin, being B3 vitamin, I've never heard of a food source causing it. You could do a search on B3 and do a food source reference. It would tell you what foods it's present in. Niacin is important, it affects brain and nerve function. So, I wouldn't think you'd want to totally cut it out of your diet. It helps with high colesterol and is given to people to help with scziphrnia. I can't take the kind that causes the flush, because it will make my throat close up. But, I can take the niacinimide form. If you find that you eat alot of the foods with niacin in it and you eliminate them, then you will have your answer, ---Maybe. It could be that you are just reacting to the foods and the vitamin isn't the culprit. Most allergist recommend to do a food elimanation diet. If you eat one food one day - you can't eat it again for 4 days. That way, you can tell if it's the food you are reacting to. In addition you have to stay in that foods family. Like for example you eat beef one day. You can have cheese and milk that day too. But, for the next 3 days - you can't have any of it. Then on the 4th day - you can have those things again. That way you can determine if a particular food family is an issue.

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I did a search & apparently niacin in foods does NOT cause the flushing that it's pharmacological counterpart does. The things that repeatedly come up when flushing is googled are: carcinoid syndrome, mastocytosis/MCAD, and rosecea. Some research articles claim that there is a strong correlation between autonomic dysfunction itself & flushing. A final thought (and I know we have brought all of these up before :rolleyes: ) is a food allergy. THAT can cause facial flushing. Have you ever had any allergy testing done?

I actually don't put much faith in traditional allergy testing: scratch or RAST (blood) testing. I'll tell you why. One day, I skipped breakfast & lunch. While waiting in the car pick-up line for my son at school, I munched on a bag of pistachios. Within a few minutes I started to feel awful. My face was burning. I was so tired I almost couldn't drive home. By the time I arrived at home, I was covered in hives. My BP was tanking- that's why I was so sleepy. I avoided an epi-pen by taking oodles of antihistamines. I later reported the episode to 2 different allergists. One did a scratch test- no allergy. The other a RAST test- no allergy. That was the ONLY food I ate that day. The symptoms occurred shortly after eating. My reaction was all of the evidence that I needed that I had identified a trigger. I now avoid pistachios like the plague. My son has a very similar experience with dairy. We are said to have severe food sensitivities, not allergies. The end result is the same

I would identify the most common food allergies through a google search. They will probably be things like: dairy, wheat. corn, soy. Then I would run a two week strict elimination. Two weeks is the minimum that Mack's doctor at Hopkins recommended. Keep a journal of flushing during that trial. Then, most importantly, take special note of how you react when you add that food back. You may get your biggest reaction at that point. Go down the list of the most common foods & do them one-by-one. Watch processed food- dairy, for instance, is in almost everything. Read labels.

I hope you get to the bottom of this, Jay. Mack flushes too, but the H-1 and H-2 (both low doses) have helped, but not eliminated this. Dysautonomiacs tend to be flushers, but your symptoms sound more severe. Let us know what you find out.

Julie

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I once was looking in the mirror and saw a bright red horizontal line move down my body, starting at my head and moving straight down- weird I waited for a high HR and all of the rest of the symptoms that accompany an episode for me & they didn't come.

Julie, you really need to investigate other possibilities as the cause for that episode -- and also as remedies: it may be that Himalayan cinnamon sticks are either the source of your problem or "the cure." (Sorry to those who are more interested in Himalayan salt).

For everyone else, you can see the type of problem with red stripes (I am sure) she is talking about at around 3:56 in this first video. Then, a very famous doctor discusses the cure. :D

http://www.youtube.com/watch?v=lHg0SaQH-40

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Ah, yes. Where is Dr. Bombay when you need him?????? :D

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Oh yes, I stay away from Himalayan cinnamon sticks for that very reason! :D

I agree, that was priceless at the utmost perfect timing for Julie's story!

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Dr. Bombay is cool, though I think Miss Often might better solve some of my personal problems... or at least distract me from them. :)

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Interesting...I just received some past test results, and my norepinephrine (plasma) was elevated at 1160 (range: basal, 116-310, standing 167-450---or something thereof, don't have the paper with me right now). However, I have been tested for pheo 3x in the past, all were negative with slightly elevated plasma normetanephrine. Thus, doctor's had essentially 'ruled out' pheo in the past.... I have also had CT scans and nothing was visible.

Could a norepinephrine level of 1160 be the cause of some major flushing (and POTS, not to mention)? I should note that I was sitting during the testing, but had not been resting for 30 minutes prior or anything, as is suggested in some readings.

p.S. Great video!

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I'm not sure if this would apply or not. I was just reading one of the post about muscle weakness and there it listed dermatomyositis and linear erythema. It goes along with a muscular type disorder that causes weakness, but there are also skin signs. One is a visual linear line that goes down your body (Julie), also there is a shawl sign which goes across your shoulders and up your neck and head (Jay). ??????? MAYBE.........

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I'm not sure if this would apply or not. I was just reading one of the post about muscle weakness and there it listed dermatomyositis and linear erythema. It goes along with a muscular type disorder that causes weakness, but there are also skin signs. One is a visual linear line that goes down your body (Julie), also there is a shawl sign which goes across your shoulders and up your neck and head (Jay). ??????? MAYBE.........

Hmmm. I only saw mine once (not usually looking in the mirror when I flush :rolleyes: ) and it's like a dark red blush but it started at the top of my head and moved down in a straight horizontal line. I was wearing clothes- not sure if it stopped or went down to my toes. I was feeling odd at the time- having lots of anaphylactoid symptoms. Like a blush, it faded w/i minutes. Linear erythema is more permanent, right? I appreciate the idea though & hope it helps Jay get to the bottom of things.

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[quote name='issie' timestamp='1284444739' post='146249

linear erythema. It goes along with a muscular type disorder that causes weakness, but there are also skin signs. One is a visual linear line that goes down your body (Julie)

Hmmm. I only saw mine once (not usually looking in the mirror when I flush :rolleyes: ) and it's like a dark red blush but it started at the top of my head and moved down in a straight horizontal line. I was wearing clothes- not sure if it stopped or went down to my toes. I was feeling odd at the time- having lots of anaphylactoid symptoms. Like a blush, it faded w/i minutes. Linear erythema is more permanent, right? I appreciate the idea though & hope it helps Jay get to the bottom of things.

I'm not really sure. I was reading through very quickly. There were some pictures of the different things. It was listed under inflamatory myosis. So, not sure if it would come and go or just be there.

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Great catch issie, thanks for the information. It is very generous of you to perform this research on our behalf!

After looking at some websites describing dermatomyositis, I don't believe this is what I have. It is an interesting catch on your part, however, and I appreciate all the input. And when time allows I will further look at this disease- just to make sure my initial impressions are correct.

Also, I asked my doctor about the norepinephrine- and he doesn't believe elevated levels of norepinephrine would cause flushing. In fact, norepinephrine causes vasoconstriction. This, and my other test results ruling out pheo, still excludes a pheo diagnosis for me.

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Hi Jay,

I was reading here:

autonomic hyperreflexia

And immediately thought of this thread. With your elevated norepinephrine levels isn't this what is going on? Note that the flushing only occurs from the point of spinal damage upwards, just like you described. Would this explain anything for you?

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Autonomic dysreflexia (hyperreflexia) is something that has been brought up before. A neurologist at UCSF ruled it out because I do not get headaches, I do not have any sweating associated with the flushing, nor do my pupils become dilated. I have not had any spinal chord injuries either, but don't recall going over this fact during my appointments with the neurologist. This is something I will keep in mind, however, as it is somewhat similar to what I am experiencing- and obviously, not everyone has the exact same symptoms (I.E. POTS patients). Luckily the endocrinologist I recently saw checked my dopamine levels, which I am awaiting the results of. If these come back positive it would be an indication for pheo/autonomic hyperreflexia. Thanks firewatcher for this info!

Autonomic hyperreflexia is interesting- while researching it, I noticed that it can also cause orhtostatic hypotension. I wonder if any one on this forum has this but does not know it (from what I read, many doctors are oblivious to it).

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