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Thread: Worst flare up of flushing

  1. #21
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    Quote Originally Posted by nat007 View Post
    Hi

    so sorry that you are experiencing the regular flushing and burning. I wonder, when you sit down or lay down, have you ever tried using a small ventilator? Pointing cool air on your face? Would that help to stop this flushing cycle you seem to be in now perhaps? The downside is that a fan can dry out the skin a bit or cause rebound if you use it too much or at too high a speed. But as a chronic flusher I do find it gives me control over these flushing attacks. Gentle air flow mainly.

    Regarding the medication, so sorry to hear that the clonidine seems to give you raynauds symptyoms and the mirtazapine seems to have stopped working... I started anti flushing medication myself back in late 2005 and have been on the same medication since - clonidine, propranolol, mirtazapine and Xyzal. Never had to change the dose too much, it seems to still work and make it harder for my face to flush. (But I still flush)
    Sometimes the symptom you describe, the cold hands and the cold burn feeling of the skin, gets better with time, as your body adjusts to the medication. But in principle clonidine and beta blockers can cause cold hands and feet... They help flushing and face redness by constricting the smaller blood vessels in the extremities. Unfortunately that also includes the hands and feet.
    Xyzal for me works really well without side effects. I do take a high dose due to allergies, like yourself. Mirtazapine seems most effective for many here at a dose of around 15 mg at night to 25 mg at night. At 30 mg or higher, the antihistamine effect of the medication lessens and noradrenaline effect takes over. I found mirtazapine more effective for depression at 30 mg, but less effective for the flushing. Although this doesn't seem to be the same for everybody necessarily. Maybe you can consider trying another antidepressant instead? Celexa also has a really good track record for controlling flushing.

    Hope this helps... best wishes!
    Thanks so much for the advice! Still flushing badly at night. It calmed down for a bit and now it's started up again. Weird as I'm now reacting to all the foods that were on my safe list. I'll definitely try a ventilator at night. Thank you for the suggestion. Hopefully that will give me some relief.

    I tried upping the mirtazapine dose to 22.5 mg but unfortunately that seemed to make the flushing worse so I've gone back down to 15mg. I'm flushing on the palms of my hands, my upper arms and my feet. Never at the same time though. They seem to alternate. The nose flushing and ears are by far the worst and sadly the pain is just constantly there even when I'm not flushing. The skin on my cheeks feel really constricted as if the nerve endings and capillaries are stretched out in a tight net over my skin. It feels dry but my skin is really oily. Does anyone else have weird sensations as if there are metal plates embedded under your cheeks? Haha I know it sounds weird I've spent a lot of time dealing with this pain by visualising it.

    I had some blood tests done and I have a low positive ANA at 1:160 but not enough to confirm specific autoimmune markers such as lupus. Apparently though my Ige was high and I have very low diamine oxidase so I guess I have problems with histamine intolerance. However antihistamines don't seem to be working consistently for me so I'm not sure. Xyzal is the one that helps me the most so thanks for the suggestion. I just can't seem to be working out my triggers which makes me think if I can't work out what foods trigger it is then maybe I don't have a problem with foods and it's something else most likely damaged nerves. I did discuss with my physician the possibility of erythromelalgia or some form of raynaud's on my face, as it's triggered in the colder months, and he said that it could be a mixture of both but I am yet to be referred to a specialist.

    Next step is trying some these of these meds. I have been prescribed hydroxychloroquine but after looking up the possibility of eye toxicity I'm a bit scared to take it. Has anyone had any eye problems on this drug? Also does it exacerbate acne? I've spent a lifetime with acne, only to be replaced by this horrible disease so I'm not looking forward to having both ;)

  2. #22
    Senior Member nat007's Avatar
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    Quote Originally Posted by owldog View Post
    Thanks so much for the advice! Still flushing badly at night. It calmed down for a bit and now it's started up again. Weird as I'm now reacting to all the foods that were on my safe list. I'll definitely try a ventilator at night. Thank you for the suggestion. Hopefully that will give me some relief.

    I tried upping the mirtazapine dose to 22.5 mg but unfortunately that seemed to make the flushing worse so I've gone back down to 15mg. I'm flushing on the palms of my hands, my upper arms and my feet. Never at the same time though. They seem to alternate. The nose flushing and ears are by far the worst and sadly the pain is just constantly there even when I'm not flushing. The skin on my cheeks feel really constricted as if the nerve endings and capillaries are stretched out in a tight net over my skin. It feels dry but my skin is really oily. Does anyone else have weird sensations as if there are metal plates embedded under your cheeks? Haha I know it sounds weird I've spent a lot of time dealing with this pain by visualising it.

    I had some blood tests done and I have a low positive ANA at 1:160 but not enough to confirm specific autoimmune markers such as lupus. Apparently though my Ige was high and I have very low diamine oxidase so I guess I have problems with histamine intolerance. However antihistamines don't seem to be working consistently for me so I'm not sure. Xyzal is the one that helps me the most so thanks for the suggestion. I just can't seem to be working out my triggers which makes me think if I can't work out what foods trigger it is then maybe I don't have a problem with foods and it's something else most likely damaged nerves. I did discuss with my physician the possibility of erythromelalgia or some form of raynaud's on my face, as it's triggered in the colder months, and he said that it could be a mixture of both but I am yet to be referred to a specialist.

    Next step is trying some these of these meds. I have been prescribed hydroxychloroquine but after looking up the possibility of eye toxicity I'm a bit scared to take it. Has anyone had any eye problems on this drug? Also does it exacerbate acne? I've spent a lifetime with acne, only to be replaced by this horrible disease so I'm not looking forward to having both ;)

    Yeh when you say you also flush on your hands and feet and ears, I also thought of erythromelalgia. Because with classic rosacea, the hands and feet rarely flush along. Although Raynauds syndrome can cause this too, indeed, and considering you take blood pressure lowering medication, this can also give Raynaud-type of symptoms... It is such a hard to crack puzzle sometimes. In case you are interested, I made a blog post once about EM and how it compares to rosacea: http://scarletnat.blogspot.com/2018/...lalgia-em.html

    Not sure about others but I do always have a very 'tight' feeling in my face. Either my skin is tight or it tingles or it burns and is hot. It's god awful.

    I have the same ANA problem as you by the way... Low positive but not high or specific enough to suspect lupus. I've tested mine every 5 years or so and the numbers have doubled over time but nothing serious according to the doctor. I think that it does cause some trouble for us flushers because this low ANA may cause low grade inflammation in the body. Which can flare up our flushing and redness, potentially.. Yet, nothing can be done about it, as far as I understand. Nobody ever gave me a treatment option to bring the ANA levels back down to 0 at least. But I see it as a sign of low grade auto-immune activity. The next thing the doctor said was also the histamine intolerance thing. It's not mastocytosis in my case, but the doctor said he has a strong feeling that these mast cells are playing an important role in my flushing symptoms. Maybe you have a similar type of issue? Because for mastocytosis they test for too many mast cells in the body. That is a simple test you can ask with your doctor or GP even. (mine was negative). But another option is that there aren't too many mast cells in your body, but that they are much too easily triggered. Something that is linked to Mast cell activation Syndrome. He advised me to radically shut those mast cells down, to see if that would control the flushing, by using three meds at the same time: montelukast (a mast cell stabilizer), ranitidine (H2 antihistamine) and a H1-antihistamine (I can stay on Xyzal for this).

    In your own case, the food related flushing may also point to a histamine factor. Histamine dilates the blood vessels. Do you notice any improvement or difference at all when you do or do not take Xyzal? 5 mg a day is normal, I always took 10 mg a day and now 20 mg a day on advise of the internist. Maybe you simply need a higher dose of it? If you flush less while on an antihistamine, you know a little bit more again about possible causes/triggers? It can be a big puzzle sometimes..

    hydroxychloroquine/plaquenil can help control the inflammation and the redness, it helps some people on here. I tried it a few times and did see an improvement of my skin, but my eyes got gritty and sore quickly. But that is very rare to happen so you may do very well on it. It takes 5 weeks however before you start seeing effects. It takes a long long time to build up in your system to therapeutic levels, and it also takes a long time to get out of your system again (I think it has a half life of a month or something like that).

  3. #23
    Senior Member Mistica's Avatar
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    I don't post much any more, so the newer members won't know my history.
    I used to be one of the worse flushers around. I am not cured by any means and likely never will be, mostly due to the collateral damage I suffered. Increased vasculature, which is abnormal in function, particularly on my upper right cheek.

    However, I no longer have regular severe flushing. I can mostly get through the night without flushing, although if I wander off my regime, the flushing increases.

    I wanted to mention fasting. It is one of best tools in the toolkit.
    If someone has a gut flora which is a major player in their flushing, fasting will be a helpful diagnostic tool.

    It also helps reset the immune system.

    I have benefited greatly from fasting.
    I implement regular intermittent fasting, (16/8 hour window) which is a good way to start. I believe Laser Cat has been doing this with benefits too.

    I then moved up to a 24 hour fast once every two weeks. My face calmed down A LOT.

    Some people manage longer fasts and I believe there is study which focused on a three day mimicking fast which has been shown to reset the immune system.

    Fasting has lots of benefits.

    Unfortunately, it does seem that the initial phases of fasting can fuel flushing.

    If someone has thyroid disease, maintain vigilance, as fasting can worsen thyroid function in some people. In others over time it can improve it.

    I have Hashimoto's and find the intermittent fasting with the two weekly (or more) 24 hour fasting is enough. I don't feel I could do more at this stage. It is important to eat a nutritionally balanced diet in between and to remain fully hydrated at all times.

    There are orthodox medical clinics which implement fasting for patients with various diseases.
    I am not talking about the holiday spa type places found in Mexico etc which are run by lay people.

    I also managed to rein in my Hashimoto's with fasting. The results were staggeringly good.
    I then had to take a course of antibiotics and within a month to three months things started to go wrong. Not longer after, I was in a severe state.
    Now I am in the process of climbing back up that mountain again.

    There is tons of information on fasting out there. It is interesting how it is very helpful in Rheumatoid Arthritis and other autoimmune diseases.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  4. #24
    Senior Member laser_cat's Avatar
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    Mistica - great you found something you can turn to reliably for night flushings. I understand the frustration in that the random "thing" (antibiotics) can make you lose your foothold. I don't eat at night and find it essential for myself

    I wonder if I have Hashi's now. I get a "jabbing" near my thyroid area. Thyroid levels are normal (didn't check antibodies, but I will...) My neck can get very hot and feel bulging. This isn't too bad by itself, but can make my face worse - increased swelling=> heat. My neck responds (partially) to NSAID's, plaquenil, and IVIG (anti-inflammatory) whereas none of these help my face, and so suspect some subclinical inflammation maybe angering my neck or maybe jaw...

    Also getting neck MRI.

  5. #25
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    Quote Originally Posted by Jamoverton View Post
    Sorry to hear your skin started acting up again after you had it under control. Is the colder weather the only factor you think could have caused it?
    My skin's main trigger is heat, so it's usually pretty happy in the winter but last year my skin did get pretty dry when colder weather came and caused some pretty bad flaring. Sleeping with a humidifier and using a thick moisturizer made an incredibly big difference in flushing- I was surprised at the difference. Just wanted to throw that possibility out there that if your skin is dry your skin's barrier could be compromised and more susceptible to triggers.
    I have the same trigger as you....HEAT!!! What moisturizing cream do you use? Once a day? What would you rate your condition when it was at it’s worse 1 being good and 10 being bad? What would you rate it now with your humidifier and cream? Sorry for all the questions just looking for a lot more relief.

    Thank you.
    Angela

  6. #26
    Senior Member Mistica's Avatar
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    Quote Originally Posted by laser_cat View Post
    Mistica - great you found something you can turn to reliably for night flushings. I understand the frustration in that the random "thing" (antibiotics) can make you lose your foothold. I don't eat at night and find it essential for myself

    I wonder if I have Hashi's now. I get a "jabbing" near my thyroid area. Thyroid levels are normal (didn't check antibodies, but I will...) My neck can get very hot and feel bulging. This isn't too bad by itself, but can make my face worse - increased swelling=> heat. My neck responds (partially) to NSAID's, plaquenil, and IVIG (anti-inflammatory) whereas none of these help my face, and so suspect some subclinical inflammation maybe angering my neck or maybe jaw...

    Also getting neck MRI.
    Hello, yes certainly get your antibody levels checked.
    Also, I'd be getting your iodine levels checked too based on your symptoms. Here, the spot urine test is regarded as the most accurate, but others disagree with that.
    I'd avoid the iodine loading test. That can cause many long term nasty side effects.

    I have found low dose iodine to be helpful to me. Particularly in reducing my flushing, but if you have hashi's, you'd have to tread cautiously. It can be a doubled edged sword.

    I read a few of your recent posts and feel delighted to see you have managed to rein in your debilitating flushing.

    I don't eat past 6pm in general, sometimes earlier.
    Previous Numerous IPL.
    Supplements: Niacinamide, Vit K2, low D3, Vit A. Moderate Dose Vit C, Iodine, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: No Cleanser, ZZ cream mixed with Niacinamide gel 4% and LMW HA 2%, ethyl ascorbate 2%.

    Treating for gut dysbiosis.(This is helping).
    Previous GAPS diet. Have now introduced lots of fibre.
    Fermented Foods. Intermittent fasting -16-18 hours.
    Oral Colostrum. Helps reduce food reactions.

  7. #27
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Mistica View Post
    Hello, yes certainly get your antibody levels checked.
    Also, I'd be getting your iodine levels checked too based on your symptoms. Here, the spot urine test is regarded as the most accurate, but others disagree with that.
    I'd avoid the iodine loading test. That can cause many long term nasty side effects.

    I have found low dose iodine to be helpful to me. Particularly in reducing my flushing, but if you have hashi's, you'd have to tread cautiously. It can be a doubled edged sword.

    I read a few of your recent posts and feel delighted to see you have managed to rein in your debilitating flushing.

    I don't eat past 6pm in general, sometimes earlier.
    Thanks for the info on iodine!

  8. #28
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    Quote Originally Posted by laser_cat View Post
    Thanks for the info on iodine!
    Hey Lizzy, I was trying to find out from Another member what moisturizing cream she recommended to help prevent flushing. Would you happen to know if any?

    Thank you
    Angela

  9. #29
    Senior Member laser_cat's Avatar
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    Quote Originally Posted by Ange4 View Post
    Hey Lizzy, I was trying to find out from Another member what moisturizing cream she recommended to help prevent flushing. Would you happen to know if any?

    Thank you
    Angela
    Sorry I don't know of any!

  10. #30
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    Quote Originally Posted by nat007 View Post
    Yeh when you say you also flush on your hands and feet and ears, I also thought of erythromelalgia. Because with classic rosacea, the hands and feet rarely flush along. Although Raynauds syndrome can cause this too, indeed, and considering you take blood pressure lowering medication, this can also give Raynaud-type of symptoms... It is such a hard to crack puzzle sometimes. In case you are interested, I made a blog post once about EM and how it compares to rosacea: http://scarletnat.blogspot.com/2018/...lalgia-em.html

    Not sure about others but I do always have a very 'tight' feeling in my face. Either my skin is tight or it tingles or it burns and is hot. It's god awful.

    I have the same ANA problem as you by the way... Low positive but not high or specific enough to suspect lupus. I've tested mine every 5 years or so and the numbers have doubled over time but nothing serious according to the doctor. I think that it does cause some trouble for us flushers because this low ANA may cause low grade inflammation in the body. Which can flare up our flushing and redness, potentially.. Yet, nothing can be done about it, as far as I understand. Nobody ever gave me a treatment option to bring the ANA levels back down to 0 at least. But I see it as a sign of low grade auto-immune activity. The next thing the doctor said was also the histamine intolerance thing. It's not mastocytosis in my case, but the doctor said he has a strong feeling that these mast cells are playing an important role in my flushing symptoms. Maybe you have a similar type of issue? Because for mastocytosis they test for too many mast cells in the body. That is a simple test you can ask with your doctor or GP even. (mine was negative). But another option is that there aren't too many mast cells in your body, but that they are much too easily triggered. Something that is linked to Mast cell activation Syndrome. He advised me to radically shut those mast cells down, to see if that would control the flushing, by using three meds at the same time: montelukast (a mast cell stabilizer), ranitidine (H2 antihistamine) and a H1-antihistamine (I can stay on Xyzal for this).

    In your own case, the food related flushing may also point to a histamine factor. Histamine dilates the blood vessels. Do you notice any improvement or difference at all when you do or do not take Xyzal? 5 mg a day is normal, I always took 10 mg a day and now 20 mg a day on advise of the internist. Maybe you simply need a higher dose of it? If you flush less while on an antihistamine, you know a little bit more again about possible causes/triggers? It can be a big puzzle sometimes..

    hydroxychloroquine/plaquenil can help control the inflammation and the redness, it helps some people on here. I tried it a few times and did see an improvement of my skin, but my eyes got gritty and sore quickly. But that is very rare to happen so you may do very well on it. It takes 5 weeks however before you start seeing effects. It takes a long long time to build up in your system to therapeutic levels, and it also takes a long time to get out of your system again (I think it has a half life of a month or something like that).
    Thanks so much for the reply! And thanks for forwarding the link to your blog. Really helpful information! My skin actually flushes in a similar pattern to yours although I get it badly on my ears and nose as well. It's very frustrating going to all these doctors and because my blood tests are almost normal and the levels aren't high enough they just decide not to go ahead and treat me. However, I do believe something is going on there. An allergist did actually suspect mast cell activation as well although my histamine test was not high enough at the time to suggest that.

    The Xyzal does help but it really varies. Some days it seems to help others it does nothing at all. And some days I worry it's making things worse, perhaps by drying out my skin. I've only taken 5mg a day so maybe I should try a higher dose. I'm really sensitive to drugs, I flush to even magnesium! Can't really handle anything so that makes it harder to treat. I tried ranitidine and flushed immediately. I'm going to do one last try of montelukast to see if that works in any way.

    I'm seeing a neurologist very soon so hopefully he may come up with some ideas.


    Quote Originally Posted by Mistica View Post
    I don't post much any more, so the newer members won't know my history.
    I used to be one of the worse flushers around. I am not cured by any means and likely never will be, mostly due to the collateral damage I suffered. Increased vasculature, which is abnormal in function, particularly on my upper right cheek.

    However, I no longer have regular severe flushing. I can mostly get through the night without flushing, although if I wander off my regime, the flushing increases.

    I wanted to mention fasting. It is one of best tools in the toolkit.
    If someone has a gut flora which is a major player in their flushing, fasting will be a helpful diagnostic tool.

    It also helps reset the immune system.

    I have benefited greatly from fasting.
    I implement regular intermittent fasting, (16/8 hour window) which is a good way to start. I believe Laser Cat has been doing this with benefits too.

    I then moved up to a 24 hour fast once every two weeks. My face calmed down A LOT.

    Some people manage longer fasts and I believe there is study which focused on a three day mimicking fast which has been shown to reset the immune system.

    Fasting has lots of benefits.

    Unfortunately, it does seem that the initial phases of fasting can fuel flushing.

    If someone has thyroid disease, maintain vigilance, as fasting can worsen thyroid function in some people. In others over time it can improve it.

    I have Hashimoto's and find the intermittent fasting with the two weekly (or more) 24 hour fasting is enough. I don't feel I could do more at this stage. It is important to eat a nutritionally balanced diet in between and to remain fully hydrated at all times.

    There are orthodox medical clinics which implement fasting for patients with various diseases.
    I am not talking about the holiday spa type places found in Mexico etc which are run by lay people.

    I also managed to rein in my Hashimoto's with fasting. The results were staggeringly good.
    I then had to take a course of antibiotics and within a month to three months things started to go wrong. Not longer after, I was in a severe state.
    Now I am in the process of climbing back up that mountain again.

    There is tons of information on fasting out there. It is interesting how it is very helpful in Rheumatoid Arthritis and other autoimmune diseases.
    Mistica, I'm very glad you are having some relief. Funny you mention fasting as I had been intermittently fasting for a while over Summer and it had been helping my symptoms. I'm going to try it again. Although I have to be careful as I do get increased flushing if I'm hungry and my blood sugar levels drop. Perhaps I need to push though that and make sure I'm hydrated.
    I also noticed that I really just cannot eat past 6pm. If I eat late in any way I will flush. So I'm trying to have earlier dinners and that seems to be helping.

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