Disastrous IPL in 2005

The only option left for me seemed IPL, Intense Pulse Light therapy, or laser therapy. This is used for vascular rosacea sometimes and aims to burn away some of the superficial blood vessels in the skin, thereby preventing the skin from becoming as red. I was doom and gloom by then and fearful I would worsen matters even more. So I went through every post I could find online, all the forums. Emailed patients to ask for their experiences with laser or IPL. Tried to find out what my chances for success and failure were. 


IPL and laser are rosacea treatment options 
that can help many patients to control or even eliminate facial redness and flushing. Many found good success with it, but there are risks involved as well and I seem to have been very unlucky so far with IPL and laser, because they either did nothing for me, or made things worse. For many, this is not the case and they help control symptoms, but I write about my own experiences here and unfortunately, they weren't great so far. If you consider IPL or laser for your rosacea, it is always wise to read up on the procedure and the doctor doing it, and have test patches done to see if your skin can handle the treatment and the settings the doctor wants to use on you. I have had a couple of IPL treatments over time. My first full face treatment turned out very bad, unfortunately. In summary, I think I was treated with an older and outdated IPL machine (the Quantum, whereas the later Lumenis One machine didn't give me worsening). My dermatologist also thinks that what went wrong with that first IPL treatment, is that a shallow filter was used (the 560 filter), which is good for superficial redness but I have a deeper flushing problem, and have very sensitive and hyper reactive skin. The 560 filter can work fine for some (also depending on the amount of joules/energy that is being used), but can trigger inflammation and in my case a lot of extra redness and blood vessel formation. For my rosacea, it was the wrong treatment. I could and would have known this before having my whole face zapped, if I had done test patches first.. But unfortunately I let the practitioner talk me out of those. I ended up with rosacea that was much worse, with worse redness and flushing all over my face where I was zapped with the IPL, whereas I used to have it only on my upper cheeks. Many people have good results with IPL or laser and a lot of improvement from it, but there are also stories of people developing skin damage from IPL or laser, unfortunately. Later I saw Dr Crouch in Swindon who took a lot of time and good care of me and did test patches to find the right settings for my particular rosacea skin. It's just important to have a good specialist and to take your time to test the right machines/settings I personally think... Find someone who has experience with rosacea treatment and always ask test patches first. Also, be prepared for the first 3 weeks after treatment to be a bit more flushy. That's normal and the bodies response to the mild injury often. HERE you can read an inventory of the success and failures others with rosacea have had with IPL and lasers (including photos).

As for my experience;
I posted several times about this on the rosacea forum, and I would normally never talk negatively publicly about any professional doctor, but in this case it is so important to have a good practitioner who doesn't just gamble with our faces. So I rather just tell things as they are. I went to the terrible Dr Mervyn Patterson from the Woodford medical clinic in Danbury, UK. I found good reviews of him on the internet and had been studying reviews for a few months before deciding to talk to him. I was very careful and flew over from Holland just for a consultation and to discuss any possible risks. I had mild to severe rosacea by then, playing up at least once a day (I never used a fan at the time), but not as bad anymore as it had been in the past. But still troublesome enough obviously to really bother me. I told him: if there would be any chance of things becoming worse from the treatment, I didn't want to undergo the IPL. He ensured me he 'never ever had had a patient who had become worse, only people who responded well or not at all'. Patterson also told me IPL was the only option left for me in his opinion and that he thought I was a very severe case anyway, so I should just do it. Test patches were not necessary according to him, although I asked for some. BOY did I regret not pressing this request at the time.... I only had rosacea on my middle/upper cheeks at this point, but he found it necessary to treat my whole face (full cheeks, chin), the next time I came over for the actual treatment. I brought my mum and sister along for this treatment day. He used the Quantum IPL (an older machine by now) and the shallow 560 filter, 2 passes I think.

While lying there, I felt an intense feeling of distress and doubt gushing over me, as the zapping was so incredibly painful and hot.

Before rosacea

When he was halfway done with the treatment, I was about to tell him to stop, wondering how this could in any way improve things. This was near torture. How could this not cause damage? But I didn’t want to look like I gave up to my mum and sister, who had come this far to support me. And on the forums people mentioned this pain sensation a lot, and it didn't seem to influence their end outcome badly. If anything, when you felt nothing when a doctor zapped you, thát would be worrisome I had read. Because the treatment could be inefficient then. So I reckoned I just had to grind through it. But I was getting more fearful with every zap as it felt like he was burning my skin. I was clattering my teeth from the pain to be honest. We needed to buy packets of frozen peas on the way back to cool my face, as I was extremely red and flushing like crazy. Uncontrollably. The plane trip back to Holland was a near nightmare, even the airport itself; I was redder than bright red, my cheeks were flushing and intensely hot. Everybody stared at me as I kept putting the frozen peas and packets of ice cubes I asked at the drink counters all over my face. I felt very worried and depressed.

The next days I was very swollen and my skin looked more pale again, although it was still burning.

But it was just the extra fluids that made the skin look more pale I found out soon. As soon as the swelling came down, the flushing came in full force, ten times worse than before. It didn’t stop after the 3 week mark, nor after 4 or 5 weeks. I emailed dr Patterson many times and he kept saying it was all normal. I was depressed beyond words. I had expected to get rid of the annoying occasional flush and now I needed a fan on constantly and I was just cooling most of my day and night. When I went through the pains of flying back to Danbury to show him my purple and swollen face, I had some spark of hope that he would be able to fix this. But disappointingly he just gasped a bit, said I was indeed very red and very flushed, and that he didn’t want to treat me anymore. When I asked him what went wrong with the IPL and why this happened, he dismissed the IPL as the cause (!!!!) My sister had tragically died some months before and he said it must have come from the grief. I could only look at him in bewilderment and utter that this was just not true and that this terrible flushing had only started to happen non-stop from the moment I received his IPL treatment. He dismissed it. It was horrendous to sit there while this doctor made up excuses. He caused this, surely being the specialist he could come up with something to turn all this back? Or maybe even partly? And why blame it on some tragedy in my family life? It was directly related to that IPL treatment. Only after his IPL treatment, this reaction set in. But his response was now that he considered me not a good candidate for IPL after all and good luck with it all. I didn't even get a refund (asif that meant anything to me anyway, but just to stress the ridiculous situation). Or any suggestions on how to reverse the damage that was done by him. It felt like negligence and I felt so depressed. Now I remembered vividly the contract I had to sign in the waiting room, minutes before the procedure started. Nice calming music had been playing in the background and testimonials from happy patients had been plastered all over the walls and in reading files.

To me it started to seem he had been after quick bucks and took his hands of it all when things got worse.

Perhaps some patients had done well with his approach, but there was clearly not a lot I could expect from the man anymore. The harsh IPL treatment made my rosacea permanently worse. I read about people with a similar negative experience by now (why didn't I read those before the treatment??) and I focused my hope on some of them improving over time. But mine didn’t settle down with time. In fact, that year (2005) was the most difficult year of my life; I was cooling 24/7 and my face was one big red flushed mess. I could control it for an hour with a fan and air-conditioning running, but as soon as I went outside or even went to the shop for 5 minutes, my face was a burning inferno again. So I took my cold packs with me and looked like an utter crazy person, and the looks and stares were just the most humiliating thing I have ever gone through. My relationship stranded, to make matters worse, some months after my sister died. While it had been in part to help that relationship with that person move forward, that I had decided to get that IPL treatment. My ex had been against the whole idea.. So it was just one great year... I cut down on my diet and lost even more weight. At some point I was weighing under 50 kilograms, which is underweight or my height. All I focused on was trying to keep my sanity, finishing my studies at university, keeping up with my friends as well as I could (but I found it hard to relate to them - and vice versa- when their lives seemed all great and positive and they didn't really understand why all I was spending my energy on was this red face of mine). In all honesty, I was drowning that year and despite my father and best friend being there for me night and day if needed, all I could do was fan and cool my face with the windows open and just despair, I developed desperate and suicidal thoughts. Not because I wanted to die, but because I felt there was no way out. When things were particularly bad one night, dad and my friend and I called the emergency doctor, who came round at 2AM and established I was flushing and very red, but that he could do nothing about it. I pleaded for something to reduce the flaring, but he had no idea and said there was nothing he could do. This made me feel even more desperate, and like there was no way out of this mess. On the Rosacea Forum, a very kind woman told me about Dr. Soldo in Houston, who had helped her with his IPL machine. And who offered me a place to stay at her house, so I could visit Soldo. Over the email he saw my photos and read my story and said he believed he could help me with a series of three IPL treatments at his clinic.

I was about to fly to the US for a consultation with another rosacea doctor, desperate for new starting points to work on, when a great friend from the forum, Peter, convinced me to try see Prof. Tony Chu from Hammersmith hospital. A dermatologist with a vast experience with rosacea.

According to Peter, Prof Chu helped him tremendously with his rosacea and thought outside the strict medical box. I had already dreaded the long flight to Houston and the whole undertaking and was happy to give Prof Chu a try first. It was this doctor who said that I should not have more IPL treatments at that point in time, and who prescribed me medication that finally took the worst part off the flushing and inflammation. The meds were clonidine (0,075 mg every 8 hours), remeron (15 mg) and propranolol (40 mg, every 8 hours). Within days of starting with the medication, I felt the burning get less and I actually slept properly on the remeron for a change. It felt after a few weeks that the threshold for my flushing was significantly heightened. It was such a relief. The remeron gave me back my appetite and I went from 48 kilos to a more healthy 60 kilos within a few months. When I got back on my feet again in my life, I started to think about IPL again. I think because it was the rage on the Rosacea Forum, which I religiously followed and read. I was no longer in 24/7 flushing hell, but I still had much worse rosacea and flushing all over my cheeks and chin than how it was before seeing Dr. Patterson. So I decided to see Dr. Peter Crouch in Swindon, UK for a consultation. He was extremely kind and knowledgeable and sincerely listened to my story, then suggested we could do as many test patches with as many lasers and IPL machines as I wanted. And only when a test patch showed true promise, could we continue with those same settings for a larger treatment. Dr. Crouch ended up performing numerous Lumenis One IPL test patches on my cheeks. 

I also saw Dr. Crouch (Swindon) who has been extremely helpful in the years afterwards 

He believed that what went wrong with Patterson was that he used an old IPL machine (Quantum IPL); that he used the wrong settings (only the shallow 560 filter, putting too much heat in my upper skin layer instead of attacking the deeper flushing vessels). That he had no test patches done. He also explained to me that my skin is ultra sensitive and the 560 filter was way too shallow and too harsh for my delicate skin, heating the epidermis too much and causing much more flushing and inflammation and just sending me from mild rosacea straight to severe rosacea. After all this, I went looking for more information on Patterson, like I had done just after the treatment. And I must have not done a proper job before seeing him (or having a preference for only the POSITIVE reviews probably), because again I read many testimonials from his patients who had similar deterioration of their skin or rosacea. This time around, the test patches with IPL and laser all showed some improvement and white areas, but the full face treatments I later had later gave me rosacea worsening again, although this time only temporary. The settings used by Dr. Peter Crouch (which gave me a white test patch but didn't work full face) are:

Lumenis One, 590nm, 615nm and 695nm filters at 20 J/cm2 with triple pulse i.e. 3 millisecond treatment pulse, 30 millisecond delay, 5 millisecond treatment pulse, 30 millisecond delay, 5 millisecond treatment pulse. 

For the Nd:YAG test patch Dr. Crouch used: Gemini laser by Laserscope, spot size 10 mm, Fluence 40J/cm2 with a 55 millisecond pulse width.  

Both machines gave me paler test patches (until this day) but the Lumenis One patch was larger and so we continued with that one. But as I said, a full face treatment with exactly the same settings set my face off for a month and then it returned to exactly the way it was before treatment. I had to take high dose NSAID medication to bring the post-treatment inflammation down. The full face treatment never gave me the same improvement as the small test area treatments had done. Making Dr. Crouch conclude we should continue cautiously with a 'painting mode' treatment plan, 'painting' smaller patches of face skin white at a time. Dr. Crouch then said he believed the skin of my face may perhaps be photosensitive. And that it can only handle small area's being treated at a time. We worked out a plan of me coming over more often, for smaller test patches. This would be time consuming and costly of course. But I was hopeful. Unfortunately Peter Crouch passed away not long after from illness :(  I have not tried finding another IPL specialist since.

Before that very first IPL treatment, I did have flushing, but not that often. Just from triggers like stress, heat, alcohol etc. I never had a fan on. I lived without ventilators. Most parts of my days and nights I was not flushed and had normal looking skin. I just flushed from stress, from heat, from the usual triggers. But when not flushed, I could function normally. Afterwards I couldn't live without constant fans and cold packs and airco. It just turned debilitating. Before I needed to actually eat the worst pepperoni pizza to create a flush for the doctor to see. Yet he told me that IPL was my only option left and that I needed no test patches to see what settings and energy levels my skin could tolerate. And he said that it would either work, or do nothing at all. Worsening of the rosacea was unimaginable in his book. Wrong... And I wasn't the only patient of his who had their rosacea worsened, I read online later. Just so unfair. These doctors just walk away and wash their hands off what they did. If only we could roll things back, go back in time. And ultimately, I had all this started from extreme stress and from stupidly using a steroid cream around my mouth. If if ifs.... Although my dermatologists say that I most likely would have developed rosacea eventually from another trigger, being predispositioned genetically. Either from hormone changes, pregnancy, sun exposure, stress, you name it. I often feel that if I wasn't so run down from being so anxious, and if I had taken more time and demanded test patches, then I wouldn't have ended up where I did. I am also very disappointed in the first IPL doctor who treated me. Not just because he refused to give me test patches when I asked for them, but also for not even acknowledging what happened. And for telling me that my rosacea and face worsened so badly due to my own stress levels, instead of the absolute obvious reason: his IPL treatment that hurt like hell and made me so much worse. Like I said: I used to flush on the apples of my cheek, not all over my face. After he zapped my entire cheeks from top to bottom and my chin as well, I flushed and turned very red ALL OVER those areas. Never had that before (as all the old pictures on here can prove; always upper cheek redness only).

Now I try to warn everyone else to make sure you get at least test patches done before jumping into the full face laser or IPL treatments. IPL and laser can help tremendously with rosacea. But don't dive in without some precaution measurements. I wanted my rosacea to be gone, ASAP. I wanted completely normal skin again, after feeling so different, and having so much stress over having a burning skin (even when it looked pale) and all these flushing triggers.. But now, I wished I had it as good as I had it before that IPL. Do take into consideration that things can always be worse, even when you now think you are in hell with your skin. When trying v-beam or IPL, realize that they are powerful machines and take your time to find out the right settings and filters and all that. Take small steps if needed. For rosacea patients who are looking into IPL or laser, I would just always go for (multiple if necessary) test patches to be sure a treatment or setting is helping. Test patches should at least show some improvement, or I wouldn't risk my face for it.. However, for a lot of people IPL and laser seems to work well and instantly, I still don't know exactly why some, like me, respond negative to it. It might be the practitioner, it might be the machine, the energy that's used, the state of our skin, sensitivity to light, medication use.... It remains very frustrating. You can read my next blog post about IPL/laser for rosacea, and patient reviews here.

You can also read more about the treatments I have tried over the years if you scroll down in this blog post. You can also read in much more detail what I tried in the process of finding a treatment, and all the (sometimes lame and desperate) messages I posted on Rosacea Forums before and after this dreadful IPL treatment I received in this blog post. At the bottom of that post I also summarize everything I tried in the past, from acupuncture to traditional Chinese medicine and healing crystals. For me, medication did help to bend the severe post treatment flushing around. 

Before and after:

Before

 

In London, early 2005, with my sister
and mother to have my first IPL treatment

A few days after my first IPL treatment,
skin still swollen

And then the redness sets in...

And it stays red, all year..

After burning skin-hell, medication starts
to help cut down on the flushing and redness. 

As you might see I basically went from mild and confined, limited redness to more severe redness over both of the full cheeks. I usually never wear make up apart from occasional mascara or for special appointments, so the middle section of pictures show exactly what my skin looked like. The flushing increased tenfold, if not more. I used to think I had bad rosacea, because I would stay pale most of the day but start to flush badly from certain foods or stress or heat, but at least I had limited and temporary flushing then and my skin could look kind of normal in color for a long time, so in hindsight it was not that bad actually. Now I wished I could go back to that state every single day. I am almost always either pink or red and I flush much more easily, from more triggers and on many more occasions. Need to stay cool or cool my face most of the time. And worst, the severe burning and pain from it. I never have been able to cut fully back on the way that IPL treatment worsened things for me, but tried over 10 times to do laser test patches in the years ahead. Both with Dr. Crouch, as well as later in my local hospital, under the guidance of my local dermatologist (old fashioned pulsed dye laser, ND;Yag laser and IPL machines), I had little expectations from the start but my derm was adamant that it helped most of his patients... But not me. He also decided in the end that the test patches with the lasers did not show enough improvement to risk zapping my entire face. My skin was simply very reactive and my rosacea severe, so he felt it was too big of a risk. Much later, in 2011/2012, I also went to a professor laser specialist in Melbourne Australia (Dr. Goodman) for a V-beam laser treatment (twice) on the lower half of my cheeks. Two test patches, again. The same thing happened there. He came to the same conclusion as my hospital dermatologist and as Dr Crouch. I listened to them and forgot about laser and IPL. Which unfortunately meant: trying to live with the rosacea as it is, while taking my anti-flushing medication... Both Dr Chu and my German dermatologist are very weary to say the least about the treatment of reactive vascular rosacea with IPL or laser. 

I now find medication the most helpful to constraint my flushing to a decent degree. I am still looking for the perfect anti-inflammatory to suppress the redness, but things look a lot better now. However, as soon as I stop taking my meds things go downhill fast again, I tried at least 3 times now to stop the mirtazapine, only to see the flushing come back with a vengeance. I later read in scientific research from 2013 an important warning from scientists, which I wished I had heard of sooner; that neurogenic rosacea patients have a heightened sensitivity to heat and sunlight, which can make laser- and IPL treatments more problematic. There is a bigger risk for these patients that IPL and laser do not give the desired results or in fact worsen matters, and they advise these patients to be very careful when wanting to use IPL or laser for their rosacea. Buggers, if only I had known this back in 2005... Scientists wrote:

"Finally, patients with dysesthesia out of proportion to flushing or inflammation can be difficult to treat and require a unique approach first used to treat disorders such as complex regional pain syndrome and neuropathic itch. [..] Because of the associated heightened sensitivity to heat and sunlight, laser- and light-based interventions should be used with caution."

In summary, IPL and laser can help a lot of patients, but it's not a given and these machines are powerful and have the ability to make things worse as well. The more sensitive your skin is and the more severe your rosacea and flushing and redness, the more risk you have of IPL and laser either not working sufficiently or making matters worse. The aim is not to scare anyone away from IPL or laser, but to make a well informed decision. Something I thought I did at the time, but in hindsight clearly didn't. Doctors might tell you IPL or laser is your only option left, that they never made a patient worse yadayada, but reality is that some people DO get worse from it. I would therefore always take your time to do test spots, with different machines and filters if possible, and not on your most sensitive inner cheek area. And take the time to get a clear image of what is working and what not. Don't let impatient doctors rush you, this is your face they are dealing with. Dr Mervyn Patterson in the UK said he never made a patient worse but he made my rosacea 10 times worse. I understand that doctors are no magicians and that no matter how good the care, treatments can sometimes just not work out. But what really infuriated and saddened me is that despite trying to take precautions, this doctor wove away my concerns and request for test patches, he ignored me wanting to have a (cheaper probably) partial face treatment and when things turned into a nightmare, he offered nothing in return. No back-up plan, no responsibility. And he said he had done nothing wrong, this couldn't have been the result of the IPL and had to be due to the stress of losing my sister a month earlier. It doesn't get any worse than that I think. Of course he didn't want to treat me any further. He withdrew from all responsibility and just shipped me off as a non-treatable patient afterwards, 'Thank you, next patient!' I remember wandering through Danbury with an almost maroon colored face, applying quickly bought bags of frozen pees to it and feeling depressed to the core. Awful times. I hope it was a one time misjudgment thing on his behalf and his patients are content nowadays, but I got the impression he was only interested in cashing in and had absolutely zero interest or care for me once things messed up badly. He is the worst doctor I have ever encountered in my life. Think wisely and limit your risks, always have test patches done first and if you want to try IPL or laser for rosacea, know it helps a lot of patients, despite the horror stories out there on the net. But that you best find a doctor with experience in treating rosacea patients.. You can read more about my IPL experience here. Photos below show laser test patches done by Dr. Crouch.