I know what your experiencing- here we are at below freezing in weather and I am shivering but can’t put on any source of heating as my feet are on fire so got to have my fan on 24/7 and my mum has to bare with this too. I have to sit with lots of fleeces wrapped round me but I’ve just gotta sacrifice everything for a little relief of my feet… Which I never get because my EM isn’t flares its constant.
In Regards to suicidal thoughts, I got diagnosed a few years ago with medical induced depression, earlier this year I was paralysed due to EM and connected nerve damage and had to re-train to walk all by myself… In a way that’s saved me and built up my emotional strength and tolerance again as I seem to get everything in extremes over the past few years and have been suicidal often. The slightest thing can effect me, I was on antidepressants for a while but they personally made me more suicidal so I, better off them. Psychologists really help, because they don’t know you so can’t judge you like family and friends can… And they listen! I really benifited from one but couldn’t keep going because of my feet making me late!
Hopefully you see the brighter side soon Xx
elizabeth said:
I reduced my nortriptyline dose to quarter of a tablet today, and still getting really bad tachycardia and horrendous flushing. The flushing and pain have also appeared in new areas, e.g. my tongue and inside of nose, plus I flush immediately on sitting or lying down because of the effect of the increased cardiac output from the tachycardia on my dilated capillaries.
Things are absolutely terrible here. I can’t tolerate any heating on even in this weather, have to have two fans on me at night and still the flushing starts in the early hours, the only way to get it to go down is to walk for about an hour. I have to do this every couple of hours through the day, it’s exhausting me and worsening the arthritis pain in my hips. I simply can’t go on like this.
Does Dr Bennett use any drugs other than the usual combinations of tricyclics/anticonvulstants/SNRIs/lidocaine patches etc to treat this condition? My GP has agreed to refer me to him but I’m not really sure what the point is if all he can suggest is all this stuff again. All of these drugs extremely marginal on pain relief, are completely ineffective at stopping the flushing and have intolerable side effects, particularly if you have severe autonomic problems. I feel like telling them at King’s that unless they can guarantee me that I can live without pain, without ongoing facial disfigurement from the burns, be able to lie down in comfort and can regain the ability to tolerate normal amounts of heat so that I can socialise normally, go home to stay with my mother, or even be able to use the rooms on the south side of my house again, I’ll just take an overdose I’ve been trying to avoid so desperately now and limit my suffering. I’ve already taken more of this torture than I can bear.
Ajh, do you mind letting us know what food and drink you've found helpful/unhelpful? I know to avoid alcohol but not sure what else might be having an effect.
Frances
mnp said:
Hi Elizabeth, Glad you had some success contacting Dr Hadden. I've just started taking Nortriptylene too (4 days ago), but it will take 1-2 weeks for any benefits to emerge. When I started taking Pregabalin and Amitriptylene my flareups got worse and generally more sensitive, but I've found the more you persevere the better the symptoms become. I'm experiencing more similar erythema/redness emerging in my hands since taking Nortriptylene and more generally sensitive to vasodilation in my feet, but I will see how it goes over 14 days or so.
For the transdermal gel, it really works to prevent vasodilation for 4-5 hours, then it wears off and gets very aggravated easily, so its not an everyday, all day fix unfortunately.
I'm finding that acupuncture has been most effective so far. after 6 sessions the heat threshold has severely risen (i.e. less sensitive to heat flareups). I still get flareups from chemicals (food, drinks etc) as well as physical - through walking (but not cycling exertion interestingly), but I can now shower and wear slippers without flareups - small but significant positive steps :)
Hi Frances. I haven't really examined the impact of different food and drink. I know alcohol is a disaster area, and I am beginning to think eating too big an evening meal is unhelpful. However, Dr Jay S. Cohen in the States has done an interesting article on 'Supplements and herbs in the treatment of erythromelalgia' on http://www.medicationsense.com/articles/2012/emsup.html FrancesE said:
Ajh, do you mind letting us know what food and drink you've found helpful/unhelpful? I know to avoid alcohol but not sure what else might be having an effect.
Frances
mnp said:
Hi Elizabeth, Glad you had some success contacting Dr Hadden. I've just started taking Nortriptylene too (4 days ago), but it will take 1-2 weeks for any benefits to emerge. When I started taking Pregabalin and Amitriptylene my flareups got worse and generally more sensitive, but I've found the more you persevere the better the symptoms become. I'm experiencing more similar erythema/redness emerging in my hands since taking Nortriptylene and more generally sensitive to vasodilation in my feet, but I will see how it goes over 14 days or so.
For the transdermal gel, it really works to prevent vasodilation for 4-5 hours, then it wears off and gets very aggravated easily, so its not an everyday, all day fix unfortunately.
I'm finding that acupuncture has been most effective so far. after 6 sessions the heat threshold has severely risen (i.e. less sensitive to heat flareups). I still get flareups from chemicals (food, drinks etc) as well as physical - through walking (but not cycling exertion interestingly), but I can now shower and wear slippers without flareups - small but significant positive steps :)
Just to let you know that I have obtained the topical Amitriptyline from the Specialist Pharmacy, thanks to Mike's info. My pain specialist has prescribed 5% cream and to continue at the same time with Amitriptyline systemically at 10% for time being. He advised that the faulty sodium channel is in every cell altho worse in the legs/extremities. He also said something about the spine having a concentration of faulty cells. I didn't get this properly and will clarify when I have understood what he meant better. Stupidly I varied another factor at the same time (my Rheumatoid Arthritis treatment) so the results are not clear. I have resumed the RA treatment at its previous level, and will later report the effect of the Amitriptyline variable
Grateful thanks to Elizabeth for her warning on capsaicin cream and the autonomic nerve system
I caught something on the internet on the use of mexiletine for EM and will post this below
Blessings all
ajh
ajh said:
Hi mnp - just caught up with this section of the discussion which I somehow missed before, and smiled as you seem to have been going the same route as me including the clinic in the Netherlands. Only thing is when I asked my dermatologist for a prescription he would not do it admitting fear of legal liability. Hence my interest in someone willing to prescribe.
all best
ajh
mnp said:
Yes, I saw the same clip too and then emailed him directly :) As for the topical gel, I sourced several academic studies trialing the use of them (albeit very small samples) but showed incredible results. Pharmacies all over the US/CA compound these gels as a matter of course, but are almost impossible to find in the UK/EU (I've been researching for weeks now). There is a clinic in the Netherlands called www.neuropathie.nu and this one in London I've found (http://www.specialist-pharmacy.com/) import the crucial transdermal base from the USA. The regular pharmacy route costs £300-500 for 100g, but the SP in London its £45 for 100gr - they can also do a gabapentin/amitriptylene mixture - but costs twice as much. Hopefully hopefully this will help as I can't stand taking the pills. The NHS is trying to fastrack a product called AmiKet (amitriptylene and ketamine PLO gel) but its still in trials for now. So specialist compounding is the only option for now. Hope this knowledge helps :) Best wishes, Mike