Has anyone here tried botox injections for their EM?
Having read studies that show that it can be effective for Raynaud's and Complex Regional Pain disorder, I recently approached the neurologist who has pioneered botox for headache and neuropathic head pain to get his opinion. He was the first person to fully confirm that what I have in my face was EM. He says he is willing to try botox, but that given that, as far as he knows, no one has ever used it for the condition it's impossible to say whether it will make things better or worse.
I did find this case study which said it had improved facial EM in the only instance in which it had been used.
He said that the only thing that was likely to help my refractory EM was 5 day lidocaine infusion followed up with mexiletine, which I wouldn't be able to get for well over 2 years, so it looks like botox is they only small hope have for any relief in the foreseeable future. Any evidence I can find to support trying it would be helpful.
I have never heard of Botox being used before but I too have severe burning on my face and scalp. I am not sure but I think I even get it in my eyes. Lately my eyes get real red sometimes accompanied by burning pain. My doctor seems to think it is dry eye and I take eye drops for them but they seem to get worse when warm. Very strange! Please let me know if it helps. Take care
Alina
Wow! You sound like me but an even worse version of myself. I get the burning tongue that seems to be set off not only by certain foods that are spicy or containing certain ingredients but even texture. I go through different periods months at a time that is is a little better and a little worse. I get the fire type burning on my face and have tried sleeping with wet washcloths on my face. I have yet to have any ulcers on my face but I have had them on my feet. For a while there my feet were so bad I thought I was going to loose them! So am I to understand you have yet to find anything that helps your eyes? I too have tried steroid drops ( very low dose) and eye lubricant. At times it seemed to get better but then using the same regiment it would also get worse! Seems to be no rhyme or reason to it. If I ever find anything that helps with any of the facial issues I will be sure to let you know and thank you for keeping me posted too! Take care
Alina
I started having, burning stinging red eyes...I was diagnosed twenty years ago with a disease called cornea dystrophy.. by an Illinois,opthalmologist & her specialty is diseases of the cornea. It causes a lot of dryness & can be painful at times..The only eye drops that I can use that I don't react badly to & they are non-prescription is Systane ultra eye drops which is also meant for dry eyes, or anyone else who has eye discomfort...It gives some relief...Also, at night, before bedtime or when my eyes get particularly dry I use petroleum jelly on the outside lids & eyelashes..And can only use the brand Equate, which is found at Wal Mart & other wise I react if I use the Vaseline brand..Recently been using a supplement called Eye Moisture Complex,a supplement that I found through Botanic Choice & that has been helping me also & cold water applied to the eyes with soft facial clothes & water you can trust like, possibly the bottled brand that you drink...
With, too, a burning face, & my face gets really red & have broken spider veins on it, at times, especially on my chin, & too on my cheeks at times, can really react to things.. I recently was diagnosed with rosacea by one dermatologist, though have had these reactions for some time now..Don't know if this is a totally, accurate diagnosis, because have EM symptoms on my feet & just learned recently that it can also affect the face,ears & nose,,My scalp used to burn, & too,have still burning mouth syndrome (BMS), though is better then it used to be...The scalp burning I no longer have, & not sure exactly why it stopped, as experiencing that was just awful...Believe some of this might be related to menopause...And, with all the additives, & preservatives in food, & chemicals in cosmetics, shampoos etc..That may be a contributing reason why there are more people with burning skin, & burning mouth reactions. & immune disorders, & not sure about EM symptoms being caused by this....
elizabeth said:
It started in my eyes, we wasted months at Moorfields eye hospital trying all the usual lubrication, steroid drops etc before they gave up. I also have something similar in my mouth and pharynx, I'm very limited in what I can eat as any foods that are acidic or have neurotransmitter like substances (histamine, tyramine, atropine-like substances in solanaceous plants) set off the oral burning/numbness. The worst pain is in my cheeks though, they feel like boiling water has been thrown on them, plus when it spread to my ear I developed a large ulcer (i.e. hole) that refused to heal for over 6 months.
I have both raynuads and em and currently see 2 speacilists’s one of which is at the royal free, I got a news letter from the royal free in London saying that they are going to be researching unto Botox for raynuads so they may well look into it for em as that’s were I was diagnosed with em
Is your EM primary or secondary? Dr David Bennett said if mine turned out to be primary he would prescribe Mexiletine. Only thing is he took the genetic test last August and I still do not have the result! May I ask who the neurologist was who suggested this approach for refractory EM
I was also interested in your comment about the Royal Free as I was told by Dr Bennett that Chris Denton would be 'ideal' as I have EM with/ (secondary to?) Rheumatoid Arthritis. However CD appears reluctant to treat other than to offer Iloprost which he doubts will have a lasting effect!! I am reluctant to put myself in the hands of someone who is not wholehearted about treating me. I will do a post for UK members to ask for suggestions as my poor old GP has written 13 referrals in 5 years and I still haven't found someone.
Best of luck with Botox. At least you have the capability to assimilate research papers
Phew - your comment has a huge amount in it for me. I looked up EDS and have a number of indicators including hypermobility. I will get this checked out and thank you. I am interested that it is not immune mediated as I don't fit the typical profile for rheumatoid arthritis.
I am puzzled as to why you cannot receive mexiletine for two years. That cannot be because of expense.
I think the secretary you encountered at the Royal Free must have gone as the current secretary is particularly helpful BUT I encountered exactly the same attitude in the doctor who took my case history prior to seeing CD, and I think it possible there is an inappropriate culture there from your other comments and my experience.
I have been seriously considering writing to the Secretary of State to describe the difficulties of finding appropriate treatment for EM especially as there was the recent announcement to counter the passing of patients from pillar to post with no one taking responsibility. This is hugely wasteful of GP time. Although there will never be huge resources put into such a minority disorder, a small task and finish group could look into it to provide a better solution, perhaps a small unit to triarge patients appropriately.
That's really helpful. I think I have seen the name Prof Christopher Mathias elsewhere. Have you also come across the Queens Square private consulting rooms where I believe some of the consultants from the NHNN practice privately? Am asking them who might be the right specialist for all my symptoms.
Now CD NHS secretary is his private secretary as well so Mrs Vile has gone!!
Firstly - it only treats specific target areas - so ,like topical agents, not much use in widespread EM or internal EM .
Secondly- it blocks release of neurotransmitter 'acetylcholine' from muscles, forcing them to relax- alleviating spasms and chronic muscle related pain rather than nerve related pain. Drugs such as topamax or even lamotrigine do similar. Headache pain has been deemed essentially 'muscle related' not unless something like vasculitic nerve damage implicated etc..so theoretically botox may allievate. EM =nerves so doubtful . Although interestingly i want to point out that EM seems to cause shortening of connective tissue e.g. tendons- and muscle (that dreadful ankle- achilles pain and calves etc.) ,so possibly botox may help with these types of spasms .
Im the proverbial guinea pig so hey- anything is worth a try in my book
Hi Elizabeth. Have you considered continued care with him and see a pain specialist as well? I don’t know how it works there but here we have to go to a pain clinic for any continued pain related care (not Acute pain). I see a rheumatologist for my EM care as far as trying through meds to lessen or stop the condition then I see a pain specialist just to try to deal with the pain associated.Madds! I say you go get those injections in your ankle-Achilles and calve ect and let us know how it goes! Thank you for being our little guinea pig! I will look more into it and talk to my doctor next time I see him ( almost a month) and see if he would consider trying it with me. I can be a guinea pig too! Take care,
Alina
I have just noticed that some comments on this discussion go against the rules of Ben's Friends communities. Please remember that this is a support group and we are here to support each other, this involves giving and receiving support. We have to remember to be respectful to other peoples views even if the differ from our own. We also have to take into account that most of us on here are in chronic pain which sometimes blur our judgements on issues and comments can be taken the wrong way. In discussions it's easy to offend somebody without meaning to because we don't have the usual clues that face to face communicating offer, for example the tone at what something is typed may look very different to how the comment is perceived.
I just want to point you to the rules of this community which are situated to the right hand side of all discussions.
Please Be Kind & Use Appropriate Language
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1. No Spam 2. No Personal attacks 3. No Offensive content (profanity, sexual references, illegal activity subject matter, pornographic material or photos)
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Specific doctor or hospital names in a positive context are welcome.
I welcome your reminder as it can stop one before going too far. We are fortunate in having members who have really penetrated the complex and varied mechanisms underlying these conditions and I find that a real help and I would not like to jeopardise these discussions. I do think it important not to make personal attacks but equally to share things we find out that might help others even if they are not always positive. For instance, subsequent to the above discussion, I have been informed by a professional 'insider' that Chris Denton at the Royal Free is keen to build up a panel of Scleroderma/Raynauds patients to support his research. I don't know whether the NHS imposes a limit on a consultants total panel, but unless you have scleroderma or Raynauds it may be a wasted journey to go there and I think it is important that people are aware of that so they can make their own choices.
Hi Elizabeth Have you come across Dr Michael Lunn in your journey. He is at the NHNN and the Queens Square rooms. I sent my main diagnoses and symptoms and they came up with him!
Any progress on your lidocaine/mexiletine treatment?
Hello everyone. Just thought I would jump in and join the discussion about Botox. I went for my regularly scheduled lidocaine infusion yesterday (I get them every 8 weeks) and my neurologist told me about a study out of Brazil where there has been great success using Botox. He asked me if I was willing to try Botox in one foot to see if it makes a difference and we will discuss the findings at my next appt. I went ahead and got many injections (100mg worth) and they really hurt but it only took about 8 minutes to inject them all. Today my foot is tender but I have had no flares in that foot yet. Here's hoping. Has anyone else tried this since the posts began?
Hello thecatlady just wondering what happened with your botoxed foot did it help ? hope so would you recommend it desperate for anything to help my daughter.
thecatlady said:
Hello everyone. Just thought I would jump in and join the discussion about Botox. I went for my regularly scheduled lidocaine infusion yesterday (I get them every 8 weeks) and my neurologist told me about a study out of Brazil where there has been great success using Botox. He asked me if I was willing to try Botox in one foot to see if it makes a difference and we will discuss the findings at my next appt. I went ahead and got many injections (100mg worth) and they really hurt but it only took about 8 minutes to inject them all. Today my foot is tender but I have had no flares in that foot yet. Here's hoping. Has anyone else tried this since the posts began?
Hello thecatlady just wondering what happened with your botoxed foot did it help ? hope so would you recommend it desperate for anything to help my daughter.
thecatlady said:
Hello everyone. Just thought I would jump in and join the discussion about Botox. I went for my regularly scheduled lidocaine infusion yesterday (I get them every 8 weeks) and my neurologist told me about a study out of Brazil where there has been great success using Botox. He asked me if I was willing to try Botox in one foot to see if it makes a difference and we will discuss the findings at my next appt. I went ahead and got many injections (100mg worth) and they really hurt but it only took about 8 minutes to inject them all. Today my foot is tender but I have had no flares in that foot yet. Here's hoping. Has anyone else tried this since the posts began?
hi catlady hope your ok cause we havent heard back from you about what happened with your botoxed foot
thecatlady said:
Hello everyone. Just thought I would jump in and join the discussion about Botox. I went for my regularly scheduled lidocaine infusion yesterday (I get them every 8 weeks) and my neurologist told me about a study out of Brazil where there has been great success using Botox. He asked me if I was willing to try Botox in one foot to see if it makes a difference and we will discuss the findings at my next appt. I went ahead and got many injections (100mg worth) and they really hurt but it only took about 8 minutes to inject them all. Today my foot is tender but I have had no flares in that foot yet. Here's hoping. Has anyone else tried this since the posts began?