I am trying to find out if other EM sufferers have found any opiates (drugs like morphine) to be helpful in relieving the pain of attacks?
I had been having injections of pethidine once a day to allow me to get a little sleep, but after some doctors decided that I must be a drug addict (despite consultants telling them I wasn't and blood flow scans showing pethidine did reduce my bloodflow) they have now been stopped and I have nothing for this pain. If you can tell me what has and hasn't worked for you, I would really apprieciate it.
It makes me mad to read about you being denied help despite your consultants back up. I wish those doctors could experience the misery of EM for 10 minutes. They'd soon be begging for mercy.
I was given Lyrica to start with but the symptoms increased and relief was zero.
Then given 10mg Amiltriptyline at night to help me get some sleep which helped a little but not much. Doc then said try 20mg and that worked a treat. All symptoms have subsided but they are still lurking under the surface as I still get a daily 'flare.' However it is so slight that it doesn't cause me to go running for the fan or cool packs. I shall update my blog about it soon.
Amiltriptyline is an old drug used in the first place for depression (at higher doses that I am taking) but is now known to help with raising the pain threshholds in people with neuropathic pain.
I have experienced some side effects from the drug but the relief from the EM symptoms far outweigh them for me.
Hope you get some help very very soon.
Tilly
ps
I hadn't come across this discussion until today - still get confused/sidetracked in my navigation of the site.
It makes me feel really angry to know that there is a drug out there to help me, but they won't give me it. EM is so rare, plus the fact that I have primary EM which is even more difficult to treat than secondary EM, that most doctors simply don't understand it and take refuge in the idea that it isn't as bad as you say it is. My dad often comments that my treatment would've been very different if I'd be male.
I actually took amytriptiline for almost 10 years but it had little impact on my pain, probably because of the slight differences in our types of EM, but thanks for the suggestion. I'm really glad that you're getting relief.
I often think a machine that could make people feel EM for a short time would be a great invention. A few minutes on their tootsies and we'd get enough opiates to knock us out for a week!
I have tried drugs in the opiate family, and all others too. Morphine wasn't even slightly effective on this pain. Gabapentine made me gain 25+ pounds quick. I tried Topamax, that made my waist length hair fall out, carbamezepine, amiltriptiline, elavil, and the list goes on. Calcium channel blocking drugs, anti depressants, the only thing that helped me slightly was in the Halcion family. Triazolam. It apparently has a different pathway into your brain. It produces an affect the same as when an alcoholic drinks, (litterally, on a brainscan of activity) I tried it by acident from a dentist looking to sedate me for a procedure. I told my doctor about it, and all the other "specialists" too and they all raised there eyebrows. It makes me feel tired. But the pain goes about a 4-5. I have inquired OVER AND OVER that however it is carried in the body to reduce the pain seems to have any answer in that. Also.... I've read a lot of your posts on here, an appreciate the knowledge you have. I wanted to suggest "Special K". A.K.A. Ketamine- It was/is a pyscotropic type drug, known as that in the 1960's. Apparently it has been effective on several patients of EM in other countries. It enduces a medical coma and apparently in that, resets the central nervous system. It is a halucinogen as well and is sometimes used in Veternary practices. They give IV lidocaine as well, with it. Any thoughts on this would be soooo greatly appreciated. I'm 36, and have also seriously inquired to leg amputations. I have it severely in both legs.
P.s. asprin has had a worsening affect on me as well. and O benefit.
Thanks for your ideas. I'm so sorry about the effects of the Topomax, as someone who's trying to grow her hair and has always dreamed of waist-length hair, you have my utmost sympathy, it must have been devestating. I am trying a combination of gabapentin, oxycodone and carbamazipine at the moment, in the hope that they will help in combination, as they didn't work seperately.
Like you, I have tried all these drugs over the 27 years I have had this disease. I think the ketamine could be really useful, it has helped in cases before, but unfortunately, doctors are really reluctant to use it, as it has a lot of side effects. I would have to try using lidocaine patches before I had an IV dose, as the patches made my pain worse when the were applied directly to the painful area, but if you just applied them to an area where you don't get flares, you can see how the drug affects you. I can't try oral lidocaine, as it isn't available here in the UK yet.
I can totally identify with the "raised eyebrows" problem. If doctors have never heard of your disease and you use a drug like the ones we're talking about, it must be fake and you're trying to get high. As Tilly suggests, maybe they'd change their minds if we gave them EM for an hour or two!
Hi Fellow Burners, when I just CANT take the pain anymore, I take 20mg of HCD which brings it down 2or3 notches on th pain scale. Have done a lot of research and I gather then most effective flare helper is a drug called Nucynta. I am going to ask for this. Isn’t it frustrating that now our govt labels pain patients as criminals? As the Wicked Witch of the West said in the Wizaed of Oz, “What a world,What a world.”
What to do? What to do? Am on fire and 20mg of hydrocodone hasn’t touched the pain. In the past it took it down a couple of notches on the pain meter. The Stellate Ganglion Nerve Block procedure didn’t help but was worth a try. It’s time to get the ice packs out of the freezer.
Called my EM doc re the Gabapentin. Have given it a chance for six months but it makes me drunk. You can’t drive when you’re drunk, can’t think properly, and forget. Am going to try Lyrica. I have a genetic defect call MTHFR. Yes you really did read that right. It’s methylene tetrahydrofolate reductase defects and causes me to be hypersensitive to chemicals. That’s why I’ve had side effects from drugs. I take magnesium twice a day & antihistamines at night. Have taken absolutely every herb & vitamin I’ve read about. Trying to maintain my sense of humor but it’s hard. Sorry to be such a Debbie Downer today.
Hi
Sorry to hear about everyone I know it is hard very hard
Just wanted to let you know that I have been on lyrica for 2 years and had helped so I can function but had to increase twice as the disorder get worse each yr it takes about 6 weeks to work so hang in there
Hi Flame, would you mind letting me know your Lyrica dosage? I know my doc will increase the dosage slowly but would love to know how much other’s doc’s have them on. Many Thanks!
I started with 75 mg now on 300 mg increased slowly 25 At a time 150morning 150 night that usually is the max but you can go to 400- 450 take care
Satochan said:
Hi Flame, would you mind letting me know your Lyrica dosage? I know my doc will increase the dosage slowly but would love to know how much other’s doc’s have them on. Many Thanks!
Hi Flame,
Thanks mucho for the info. Had a surprisingly good day yesterday and so far today am fire free. Will wonders never cease. The thing about this thing is I could be burning 15 minutes from now but will enjoy now right now. BTW, Flame, I know we’re all different; but have you experienced any Lyrica side effects? It’s great to no longer have Gabapentin fog-brain!!
Am going to send off the 23andMe sample tomorrow for genetic testing. Will be curious to see if my EM is genetic or idiopathic. Hope you have a COOL day.
Hi satochan
It is great if you can keep the flares away . Lyrics does not take flares away but can help with pain . It takes about 4 -6weeks to work and have not experienced any noticeable side effects other that some wait gain but that might be due to not being able to do much . I have been reading that Effexor has been working for some people . Have you noticed any numbing in the feet and hands I have and it feels awful not sure if it is EM or something else .
Hope all is well and stay cool .
Your screen name makes you sound like a Super Hero. Which, I guess we all are. Right?
As for your question… I haven’t noticed any numbing. In fact just the opposite-hyper sensitivity. Electric shocks going down the sciatic nerves in my legs and along the outer edges of the soles of my feet has started in the last couple of weeks. Annoying, but so far not excruciating burning pain like in my palms. Stay cool!
Flame said:
Hi satochan It is great if you can keep the flares away . Lyrics does not take flares away but can help with pain . It takes about 4 -6weeks to work and have not experienced any noticeable side effects other that some wait gain but that might be due to not being able to do much . I have been reading that Effexor has been working for some people . Have you noticed any numbing in the feet and hands I have and it feels awful not sure if it is EM or something else . Hope all is well and stay cool .
Hi satochan
I believe I have perifferal neuropathy as well as EM and can not walk very well also in hands
Feel like I need to be in hospital I am going to try to get in .in the last 3 weeks it has change so fast . My dad had this neuropathy . Stay safe
Hi satochan
Hope all is well today
Are you in the U.S. I live in Canada winters are good for us here summers not so much
Thank you for your thoughts . Are you working ? I don’t now finished 2years ago .
I am trying to go to a pain clinic in a hospital supposed to be one of the best in Ontario I have been reading about treatment other than drugs. One is called intravenous immunoglobulin therapy .
Have you tried topical creams Amitriptylun combined with ketamine ?
And topical midodrine .i am spending most of my time researching .stay well keep moving as my lovely dad would always say keep eating and moving
Hey Flame, Thanks for the reply. Yes, I use a compounded ketamine, lidocaine,etc cream. It can take the burning down one or two notches. I retired 4 yrs ago a little early. Thank God. I couldn’t have worked with EM. I started burning about 2 yrs ago, I guess. You know how time just sorta gets away from you? Off topic: Have you read the Inspector Armand Gamache novels by Louise Penny? He was the fictional Chief Inspecteur of Police in Montreal. I fell in love with every character and Canada. It made me want to move there, speak only French and eat pastries the rest of my life and be surrounded by kind Canadians. I’ve read them all and can’t wait for her to publish the next one. I hope the day is kind to you.
Flame said:
Hi satochan Hope all is well today
Are you in the U.S. I live in Canada winters are good for us here summers not so much
Thank you for your thoughts . Are you working ? I don’t now finished 2years ago .
I am trying to go to a pain clinic in a hospital supposed to be one of the best in Ontario I have been reading about treatment other than drugs. One is called intravenous immunoglobulin therapy .
Have you tried topical creams Amitriptylun combined with ketamine ?
And topical midodrine .i am spending most of my time researching .stay well keep moving as my lovely dad would always say keep eating and moving