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Thread: Neurogenic Rosacea Need HELP

  1. #11
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    Quote Originally Posted by opare View Post
    Hey, any updates on this?
    Hi Opare, yes, I do have some updates. I did increase my propranolol to 40 mg three time per day. I also take Clonidine .2 mg three times a day. Combined they give me probably 10% benefit. They did well at preventing some of the emotional flushes but didnít touch the heat sensitivity at all. My condition is very severe in that I flush 24/7 unless I can fan or spray myself or jump in AC right away.

    I was going to wait to share the next bit of info but I will give you some now. I was introduced to LDN (low dose Naltrexone) on another thread started by Fiugs about a year ago. I followed the thread and there were a handful of people getting pretty good results so I started it myself. Tonight is my 16th day. It can take up to six months to notice a difference. I, fortunately started noticing subtle positive changes on day 12. Each day it gets a bit better. I do not want to jinx myself but my heat sensitivity is definitely way down.

    Iím going to update more about it at my one month mark on the original thread. What are your particular issues? Do you have neurogenic rosacea?

    Be Well
    Angela

  2. #12
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    Quote Originally Posted by Ange4 View Post
    Hi Opare, yes, I do have some updates. I did increase my propranolol to 40 mg three time per day. I also take Clonidine .2 mg three times a day. Combined they give me probably 10% benefit. They did well at preventing some of the emotional flushes but didn’t touch the heat sensitivity at all. My condition is very severe in that I flush 24/7 unless I can fan or spray myself or jump in AC right away.

    I was going to wait to share the next bit of info but I will give you some now. I was introduced to LDN (low dose Naltrexone) on another thread started by Fiugs about a year ago. I followed the thread and there were a handful of people getting pretty good results so I started it myself. Tonight is my 16th day. It can take up to six months to notice a difference. I, fortunately started noticing subtle positive changes on day 12. Each day it gets a bit better. I do not want to jinx myself but my heat sensitivity is definitely way down.

    I’m going to update more about it at my one month mark on the original thread. What are your particular issues? Do you have neurogenic rosacea?

    Be Well
    Angela
    Hi Angela, thank you so much for replying. =)
    If I'm honest with you I don't even know what is wrong with me :S no Dermatologist has ever confirmed anything like Rosacea, Sebderm, Acne or whatever. What I do have is an eczema on my scalp that I'm currently treating 10 days with a strong fluid because I noticed hairloss and itchiness.
    What I more have been experiencing for years now is super sensitive red skin, usually the side I slept on, that doesn't go away during the day. It's so tiring and I think it slowly gets worse with more and more flushing and heat intolerance.
    I've treated oily skin/acne with Accutane for years, come and goes and I always thought that has to be an side effect. Now 6 months since my last therapy I still have this super sensitive feeling that doesn't go away. I'm a mess and I've isolated myself only up to a few people, because I can't really do anything that doesn't trigger that feeling. As well I've gained weight over the last few years that doesn't help my confidence or health.
    I did an ETS surgery in 2012 because of my flushing and at first everything felt good, now I'm a mess that gets these sensitive red hot feelings as described before. And I still don't know if it is something from the surgery or maybe the Accutane or both?! The stress is killing me not knowing and soon starting a new job doesn't help either.
    Sorry all this text, just want you to give a "bigger" picture as I'm looking through these forums daily and I saw your entry with what I feel might be similar to what I'm having.
    One thing, I started Accutane last week on the lowest dose (5mg a day) for about a week but have already stopped due to my soreness, sensitive heat feeling, flush, red skin, migraine feeling, just like a crawling. Whatever happens I think I won't touch Accutane again as my bowel is more fluid and has been for quite some time now. I read that bad skin etc. can come from bad gut health. First tests here with my doctor have of course not given anything.
    Now I'm trying to improve it with Zinc, Omega, Magnesium tablets. Have you had any experience with Magnesium? Or what do you think? :S
    I did an MRI years ago without showing anything.

    Reading that myself I have pretty much GAD, Exhausting

    Anyhow, thank you in advance.
    Last edited by opare; 19th May 2019 at 06:07 PM.

  3. #13
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    Quote Originally Posted by opare View Post
    Hi Angela, thank you so much for replying. =)
    If I'm honest with you I don't even know what is wrong with me :S no Dermatologist has ever confirmed anything like Rosacea, Sebderm, Acne or whatever. What I do have is an eczema on my scalp that I'm currently treating 10 days with a strong fluid because I noticed hairloss and itchiness.
    What I more have been experiencing for years now is super sensitive red skin, usually the side I slept on, that doesn't go away during the day. It's so tiring and I think it slowly gets worse with more and more flushing and heat intolerance.
    I've treated oily skin/acne with Accutane for years, come and goes and I always thought that has to be an side effect. Now 6 months since my last therapy I still have this super sensitive feeling that doesn't go away. I'm a mess and I've isolated myself only up to a few people, because I can't really do anything that doesn't trigger that feeling. As well I've gained weight over the last few years that doesn't help my confidence or health.
    I did an ETS surgery in 2012 because of my flushing and at first everything felt good, now I'm a mess that gets these sensitive red hot feelings as described before. And I still don't know if it is something from the surgery or maybe the Accutane or both?! The stress is killing me not knowing and soon starting a new job doesn't help either.
    Sorry all this text, just want you to give a "bigger" picture as I'm looking through these forums daily and I saw your entry with what I feel might be similar to what I'm having.
    One thing, I started Accutane last week on the lowest dose (5mg a day) for about a week but have already stopped due to my soreness, sensitive heat feeling, flush, red skin, migraine feeling, just like a crawling. Whatever happens I think I won't touch Accutane again as my bowel is more fluid and has been for quite some time now. I read that bad skin etc. can come from bad gut health. First tests here with my doctor have of course not given anything.
    Now I'm trying to improve it with Zinc, Omega, Magnesium tablets. Have you had any experience with Magnesium? Or what do you think? :S
    I did an MRI years ago without showing anything.




    Exhausting

    Anyhow, thank you in advance.
    Opare, donít give up!! I felt so hopeless til 19 days ago when I started the LDN (low dose naltrexone) that was strongly recommended on another thread. I didnít want to give an update on it for me until I was on it 30 days but I see that you are needing to know that there is hope. I am on my 19th day and I can tell you that I went to a function today and I did not have my fan on or my spray bottle on my face. You have to understand I take that fan and spray bottle everywhere I go even in my house my face is always always on fire. It felt like the rest of my body which was a normal temperature. I did have a flare a little one yesterday and I had one the day before but overall the heat sensitivity is way down and I mean way down. And this is only the 19th day. Iím assuming and hoping itís going to get better. You should check into this medication as it is compounded. I donít know if you live in the states or Europe but I live in Florida and it was easy to get and very in expensive. I take clonidine and propranolol and they help about 10% and I was still miserable even though I was taking those. I feel like Iím actually getting my life back if this continues to improve like it has been every day then I think this medication is a success. I found out from other people that it doesnít work for everyone and if it does work for other people it may not help as much but I have found that people tell me that people with the phenotype one or the neurogenic rosacea form they tend to do better. I would stay off the Accutane because if you look at the information it can cause a lot of the rosacea flushing and redness.

    Please keep me posted on your progress. And I would really suggest getting started on this as soon as possible. Theyíre a little to no side effects also. If you want to read more about this go on the first page where it says newbies and look down at the word prescriptions and medications and click on that and then if you look through carefully you will see a thread started by Fiugs getting something to the effect of my Journey with low-dose naltrexone.

    Good luck and keep in touch.

    Angela

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    Quote Originally Posted by opare View Post
    Hi Angela, thank you so much for replying. =)
    If I'm honest with you I don't even know what is wrong with me :S no Dermatologist has ever confirmed anything like Rosacea, Sebderm, Acne or whatever. What I do have is an eczema on my scalp that I'm currently treating 10 days with a strong fluid because I noticed hairloss and itchiness.
    What I more have been experiencing for years now is super sensitive red skin, usually the side I slept on, that doesn't go away during the day. It's so tiring and I think it slowly gets worse with more and more flushing and heat intolerance.
    I've treated oily skin/acne with Accutane for years, come and goes and I always thought that has to be an side effect. Now 6 months since my last therapy I still have this super sensitive feeling that doesn't go away. I'm a mess and I've isolated myself only up to a few people, because I can't really do anything that doesn't trigger that feeling. As well I've gained weight over the last few years that doesn't help my confidence or health.
    I did an ETS surgery in 2012 because of my flushing and at first everything felt good, now I'm a mess that gets these sensitive red hot feelings as described before. And I still don't know if it is something from the surgery or maybe the Accutane or both?! The stress is killing me not knowing and soon starting a new job doesn't help either.
    Sorry all this text, just want you to give a "bigger" picture as I'm looking through these forums daily and I saw your entry with what I feel might be similar to what I'm having.
    One thing, I started Accutane last week on the lowest dose (5mg a day) for about a week but have already stopped due to my soreness, sensitive heat feeling, flush, red skin, migraine feeling, just like a crawling. Whatever happens I think I won't touch Accutane again as my bowel is more fluid and has been for quite some time now. I read that bad skin etc. can come from bad gut health. First tests here with my doctor have of course not given anything.
    Now I'm trying to improve it with Zinc, Omega, Magnesium tablets. Have you had any experience with Magnesium? Or what do you think? :S
    I did an MRI years ago without showing anything.

    Reading that myself I have pretty much GAD, Exhausting

    Anyhow, thank you in advance.

    Opare, I forgot to address a few things you posted. I do take a variety of supplements including magnesium because it is good for so many things. While itís good for many things I donít think it does much for my condition. I also take alpha lipoic acid 600 mg in one pill. You can split that up into two pills of 300 mg if you choose. That is supposed to be good for many things as itís a potent antioxidant plus itís supposed to help nerve function. Of course fish oil is always good to take along with a b-complex. My condition is so severe that it feels like someone is pouring acid on my face almost all day long unless I try to prevent it with either ice packs, spray bottles, fans or AC. I was so desperate that I looked up ETS surgery. Iím now glad I did not go that route. I have never heard anyone else who wakes up with one side of their face red. That happens to me all the time. Another trigger of mine is touch. As for weight gain, I used to own my own fitness studio and even did body building shows back in the 90s and I got so depressed this past year that I put on 60 pounds. I took control of that and have 32 off so far. I have an odd question.....do you perspire?
    Does your face perspire? That was something that was interesting with the LDN. A few woman who couldnít or barely perspired started to perspire after being on the LDN. Not to the point where it was an annoyance just enough so that the bodyís natural cooling mechanism was functioning. I do not perspire. Not even on my face. What I have notice only 19 days on LDN was that Iím starting to sweat on my back, my bra area. Not my face yet though and not under my arms yet. I have never tried anything that gave me such hope as LDN has. You can tell by reading my first post, I was at my wits end like you. Where do you live? I can guide you on how to find LDN for you if you choose to go that route.

    Please keep me posted as I will with you.

    Angela

  5. #15
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    Hi Angela -

    I am so pleased you have found something to help you. I hope you just get better and better results w/ the LDN.

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    Quote Originally Posted by laser_cat View Post
    Hi Angela -

    I am so pleased you have found something to help you. I hope you just get better and better results w/ the LDN.

    Thanks Lizzy. I hope so too. I donít want it to be a fluke which I know that it is not but I have a long way to go. Iíll post on Fiugs original thread at 30 days then 60 days and so. I just hope it can help other people.
    Do you feel that you received any benefit from it at all?

    I have been stalking your posts for awhile and you have such a breadth of knowledge thatís help people from all over and wherever this forum reaches. I appreciate you for that.

    Take Care.
    Angela

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    Quote Originally Posted by Ange4 View Post
    Thanks Lizzy. I hope so too. I don’t want it to be a fluke which I know that it is not but I have a long way to go. I’ll post on Fiugs original thread at 30 days then 60 days and so. I just hope it can help other people.
    Do you feel that you received any benefit from it at all?

    I have been stalking your posts for awhile and you have such a breadth of knowledge that’s help people from all over and wherever this forum reaches. I appreciate you for that.

    Take Care.
    Angela
    For sure keep us updated.

    Yes I have tried LDN a couple times over the past yr and unfortunately it does not help me that much (side effects made me stop after 6 wks - I think was my longest trial anyway). My pain doc and derm were all for it...
    It was interesting though, it actually lowered my blood pressure (i tend to have high bp) so I definitely believe - amongst the other stuff it does - that it lowers the fight/flight system / decreases sympathetic outflow.

    The limiting side effect for me was that it tanked my mood no matter the rampup. If I am going to be dealing with flushing/burning, i might as well be ... less unhappy about it - so went off

    take care, + thanks for your kind words,

    Lizzy

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    Quote Originally Posted by laser_cat View Post
    For sure keep us updated.

    Yes I have tried LDN a couple times over the past yr and unfortunately it does not help me that much (side effects made me stop after 6 wks - I think was my longest trial anyway). My pain doc and derm were all for it...
    It was interesting though, it actually lowered my blood pressure (i tend to have high bp) so I definitely believe - amongst the other stuff it does - that it lowers the fight/flight system / decreases sympathetic outflow.

    The limiting side effect for me was that it tanked my mood no matter the rampup. If I am going to be dealing with flushing/burning, i might as well be ... less unhappy about it - so went off

    take care, + thanks for your kind words,






    Lizzy

    Lizzy, what would your opinion be as to why LDN is helping with my heat sensitivity? Iím definitely not where I need to be but for just 19 days, it has been a solid improvement.

    Angela

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    Quote Originally Posted by Ange4 View Post
    Opare, I forgot to address a few things you posted. I do take a variety of supplements including magnesium because it is good for so many things. While itís good for many things I donít think it does much for my condition. I also take alpha lipoic acid 600 mg in one pill. You can split that up into two pills of 300 mg if you choose. That is supposed to be good for many things as itís a potent antioxidant plus itís supposed to help nerve function. Of course fish oil is always good to take along with a b-complex. My condition is so severe that it feels like someone is pouring acid on my face almost all day long unless I try to prevent it with either ice packs, spray bottles, fans or AC. I was so desperate that I looked up ETS surgery. Iím now glad I did not go that route. I have never heard anyone else who wakes up with one side of their face red. That happens to me all the time. Another trigger of mine is touch. As for weight gain, I used to own my own fitness studio and even did body building shows back in the 90s and I got so depressed this past year that I put on 60 pounds. I took control of that and have 32 off so far. I have an odd question.....do you perspire?
    Does your face perspire? That was something that was interesting with the LDN. A few woman who couldnít or barely perspired started to perspire after being on the LDN. Not to the point where it was an annoyance just enough so that the bodyís natural cooling mechanism was functioning. I do not perspire. Not even on my face. What I have notice only 19 days on LDN was that Iím starting to sweat on my back, my bra area. Not my face yet though and not under my arms yet. I have never tried anything that gave me such hope as LDN has. You can tell by reading my first post, I was at my wits end like you. Where do you live? I can guide you on how to find LDN for you if you choose to go that route.

    Please keep me posted as I will with you.

    Angela
    thank you Angela,

    I'm sorry I might ask you questions you have already answered but I'm panicking a lot lately and have difficulties concentrating.
    I would like to try LDN as I need some kind of help urgently. How much is low dose? Is that something that you asked the doctor for yourself or did he recommend that? I'm male and weigh 200 pounds not sure what dose I should take. I read the general daily dose is 50mg daily? I'm a bit worried to take medication as I'm that sensitive at the moment. The list of side effects is worrying.
    You said it slowly helps you with sensitivity. Flushing too? Redness of the skin? Before the medication did you get like tingle feelings around the head too?
    I have an appointment at my neurologist start of July. Therefore I have to try it via my dermatologist or the local doctor. I live in Switzerland.
    If I'm honest I don't even care how red my skin is or I have slight acne/oily skin as long as I could improve my over sensitive.
    In February I was working out daily and I could handle the symptoms quite good. But now its just awful. Maybe because I'm nervous to start my new job coming June don't know how my body will react. Generally I think new environments are a huge trigger for me. I have to go back from car to public transport too which doesn't help with anything.

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    Quote Originally Posted by opare View Post
    thank you Angela,

    I'm sorry I might ask you questions you have already answered but I'm panicking a lot lately and have difficulties concentrating.
    I would like to try LDN as I need some kind of help urgently. How much is low dose? Is that something that you asked the doctor for yourself or did he recommend that? I'm male and weigh 200 pounds not sure what dose I should take. I read the general daily dose is 50mg daily? I'm a bit worried to take medication as I'm that sensitive at the moment. The list of side effects is worrying.
    You said it slowly helps you with sensitivity. Flushing too? Redness of the skin? Before the medication did you get like tingle feelings around the head too?
    I have an appointment at my neurologist start of July. Therefore I have to try it via my dermatologist or the local doctor. I live in Switzerland.
    If I'm honest I don't even care how red my skin is or I have slight acne/oily skin as long as I could improve my over sensitive.
    In February I was working out daily and I could handle the symptoms quite good. But now its just awful. Maybe because I'm nervous to start my new job coming June don't know how my body will react. Generally I think new environments are a huge trigger for me. I have to go back from car to public transport too which doesn't help with anything.


    Opare, I do not mind the questions. I have been there. Naltrexone was originally for alcoholics and drug addicts in those high doses in order for them to get clean. A dr in the 80s discovered that Iíd you you use low doses of naltrexone (1.5 mg-4.5 mg) titrated up then many people with other diseases can reap tremendous benefits. I followed the protocol exactly which is.... 1.5 mg for two weeks at bedtime around 10:30. Then add .5 mg more each week so I am now at 2.0 mg. Then go up .5 mg each week until you reach 4.5 mg. Stay there or drop back down on your dose if you feel the lower dose works better. It is a compounded medicine. Iím in the US and mine are pills. You may have to use a liquid. Make sure that you start at the lower dose. I am going to have another person from the UK contact you here on this thread so as to guide you on how to get this medicine I. Switzerland as the US is very different. Her name is Judy.
    I do get tingling usually on my face but sometimes on the lower part of back of my head. Your weight wonít matter with this dosage. There are little to no side effects with LDN. I will get a hold of Judy and have her post here to help you.

    Good Luck.
    Angela

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