Hello, to those who have not tried a ketamine infusion for pain. I am currently an in-patient at the St Vincents pain clinic after a nasty couple of weeks. My EM seems to have progressed in severity and into a more extensive distribution. Don't know why just bad luck I think. After getting a prompt appointment to see my pain doctor and telling him about my progress... backwards, he admitted me to the clinic.
The ketamine is given as a slow infusion ,in the initial I am getting 200mland 150 ml clonidine. IT is administered via a needle just under the skin of the abdomen attached to tubing and timed pump. The whole process takes 5-7 days as an inpatient.Although one woman I spoke to is here for 14 days.
There do not seem to be as serious side effects as with many other meds. Dizziness is common ,nausea and tiredness are possible along with flushing!
Of course I am flushing everywhere the EM is but it is oddly not really painful.
I am feeling fairly spaced out and am concentrating very hard to type! Need to be checked two hourly obs 24 hours ,so bp does not drop. I am a weird combo of stoned and bored and anxious ( in case it does not work very well) Well hoping for some immediate AND lasting relief- tall order I know - tizzy/dizzy /whizzy
I am so sorry you have taken a turn for the worst dear Tizzy. You are so brave to try this treatment with little known on its efficacy with EM. It sounds as if it has helped a lot of other pains associated with it just not so much the burning itself. I am so glad you are getting some relief anyway.
Thank you so much for keeping us posted on how you do.please keep us updated on you ups and your downs. Hopefully a lot more ups!
Take care,
Alina
Wishing you the very best, Tizzy, and hoping you feel better soon! Lasting relief would be wonderful. I hope you get it. :)
Good luck Tizzy. I am sorry you have been having much worse pain. Hopefully this will settle it. 2 hour obs are no fun though it helps if you are stoned!
I have an appointment next week to discuss a ketamine infusion so am particularly interested to know how it goes for you.
Best wishes
Nel
Good luck with the treatment!
YES ketamine infusions have helped me immensely in the past. I usually need a 7 day continuous infusion, and don’t feel much relief until day 3. Of course I’m hopeful that you feel it ASAP.
I have bad luck with clonidine since it causes big flares for me.
Drink lots of water and be positive! Ketamine can cause a bit of a strange mental situation while administered, so don’t stress out. It’s normal. Oh, and…this might sound strange… But no scary movies right now! I’m serious. Ketamine + scary movies = creepy thoughts : )
I hope this is a wonderfully beneficial treatment for you!
Pesto
Best of luck, Tizzy. Hope it goes well!
Is this a Baxter pump , Tizzy? I tried similar with Lidocaine.
BLESS YOU! Hope this proves the treatment that works for you.
Thinking of you my friend. Praying that you find some relief. I so hate this syndrome.
x
HiTizzy -
I hope that it does you some good - and it is worth the effort of the side effects .... Is this just a trial to see if it works and if it does will you have to have this done regularly or go onto a script for self injections at home or local clinic or perhaps a pill/tablet form ? Keep your chin up and remain hopeful there has to be something that works for you ...
I am having a hard time of it the last 6 weeks and will discuss it with my doc on tuesday - very painful right foot and currently on Lyrica 150mg twice a day which is helping to a degree, but any help is appreciated ...
Take care - We're with you all the way ...
Greg - frostbite
Cooma NSW
Gosh what helpful nurses you have in Oz.
I hope you get some improvement soon, it sounds like they are giving you the works. Don't be anxious, with everyone rooting for you, you have nothing to worry about.
Hello Tizzy,
I do think you are brave…or desperate! What a fun side effect it is to lose your joint aches and pains. I enjoyed the same while on morphine but breaking a leg to get the medication is a bit drastic. I had never associated the joint pain with EM but why not. EM is such a weird and slippery condition.
We are having a couple of warm days which my body is clearly upset and confused about, just as we were beginning to adjust to the cold. However the tail end of hurricane Hugo is on its way with high winds and the temperature will drop again just as I am beginning to adjust to the warm spell. Sorry but the British really are obsessed with the weather even though there are so few of us with EM.
I just nearly double-booked myself for babysitting so my son can go to School Parents Evening and my daughter out for a meal. Luckily I will be back from one to be home for the other. I have felt such a burden on the family since the leg and it feels good to be able to help out just a little.
I am glad you have gone to four hourly obs and a better hope of some good sleep. Good night Tizzy. We are all wishing you well.
Nel
My problem is I am a coward. Not sure if I could sign up to it. Looking forward to discussing it at least next week.
Cheers.
Nel
How many therapeutic challenges!!!!
Baxter pumps allow subcutaneous administering at home . Has safety device built in but allows freedom of flexible pain management. Prone to infections like PIP (David knows about this more than anyone I know). This option hardly ever mentioned ,let alone offered. Use in lidocaine and propofol with ketamine, With widespread EM found Baxter method rather ineffective. Imagine localised pain/EM - best results. LWE have an old posts on this topic. I think it was called IV infusions or maybe Baxter pumps :-)
IV ketamine has been administered to EM patient . Case study positive results. Japan. My account having delay to access paper. Post as soon as I can.
Successful intravenous administration of low dose ketamine for pain caused by erythromelalgia: report of a case.
Kaori Uchida et al,2002
Topical cream is prescribed- usually compound amitryptiline/ketamine . Have uploaded .
God bless
@Veerla - delayed pee pee- I have the same problems. Bladder never evacuated properly either. Intertestital cystitis diagnosed due to EM. Have you been diagnosed with this too?
205-lidocainebaxterpumpAppendixBSUBCUTANEOUSLIDOCAINEADMINISTRATIONATHOMEdraft2.pdf (236 KB)@Tizzy. Dearest Miss Tizzy- my beloved friend, how are you feeling today? Is it helping you? You think its 'reset' the wiring?
@everyone.Ketamine debate. Found opposite here in UK. My experience is lidocaine preferred over Ketamine. I have lidocaine intravenously. My specialist says opposite about ketamine - although admits lidocaine cardiotoxicity risk I mentioned baxter pump because its subcutaneous and can be administered by patient at home. They teach you how to use it , of course. Its worth a shot seeing if they allow. - although would be much diluted. I know of a couple of cases UK allowed baxter pump lidocaine for localised pain. Unfortunately for systemic /widespread you need an IV or i would be needles everywhere like a pin cushion .
Really angers me how we are all treated so differently,such a lack of consensus even nationally!. Only thing Dr's seem to agree on is the firstline treatment - gabapentin/pregabalin, aspirin, amitrytiline. Great we got community like LWE and associations like TEA where we can pool resources, share information , support each other and try to educate the medics.
@Nel - you will be fine at Royal Free. They are real specialists - bless you. We are all thinking of you. Havent they offered you Iloprost IV ?
@Veerla. If not IC - look at ANS dysfunction. My entire body affected now. Whats your blood pressure /pulse like? low? Do you get gastro problems too. I remember you mentioning colic pains - cramps didnt you? People are not aware that EM can be systemic both external and internal.Organs are definitely affected. Myself and Alina have systemic - its never ending. BTW- Alina has tried medical marijuana if you want to ask her about it :-) UK its not legalised so you have to beg for the awful spray version (on prescription), or go purchase the naughty way ;). Holland - you are SO lucky lol!. Uploaded IC info for you. Had it in my library.
Wishing you all a 'comfortable' night dear friends
God bless
x
IC and the potential role of Gabapentin
Mads, yes they have offered me Iloprost but I am worried after the damage done to my heart during the operation on my leg. My neurologist said ketamine would be safer. But that scares me too. I nearly died 7 months ago and am now petrified of anything that could affect my heart.
Ha ha. Not in perpetuity dkel. My offspring would despair!
Best thing about the heart thing was I was too out of it on morphine to realise what was happening or had happened until I was well again:). Hard on my kids at the time.
dkel9307 said:
I didn’t know that, Nel.
So glad you are still around…and hope that’s the case in perpetuity!
Look after yourself,
David (Dkel9307)
Nel said:Mads, yes they have offered me Iloprost but I am worried after the damage done to my heart during the operation on my leg. My neurologist said ketamine would be safer. But that scares me too. I nearly died 7 months ago and am now petrified of anything that could affect my heart.
I know my dearest Nel. How bloody worrying this is for you. I can only suggest that remember you are in real safe hands;Royal Free are fabulous. And bombard that Specialist nurse with questions. I dont know anyone in UK who has had ketamine for EM . My specialist did refer to it last year but preferred me to go with lidocaine. Hmmm. Im going to attack him with a file of research next month. Lucky him lol! Shame about Iloprost- really works for some people.
Thinking of you
Biggest hug
x
Nel said:
Mads, yes they have offered me Iloprost but I am worried after the damage done to my heart during the operation on my leg. My neurologist said ketamine would be safer. But that scares me too. I nearly died 7 months ago and am now petrified of anything that could affect my heart.
Praying and thinking of you always my wonderful friend. Im so sorry you got to go through this Tizzy. Things were looking a little calmer werent they (despite ongoing pain). This is what this damn thing does. Lulls you into a false sense of security. You think it cant get any worse , then it does BANG! Glad we all got each other to keep us strong.
God bless
x
Tizzy said:
Why my darling Miss Maddy, I find myself quite unchanged today.I have spent the aternoon flaring merrily ,while I try and run away from the dreaded physio who is quite unpardonably rude in her determination to drag me to the gym. I feel my health would be better served by knocking back mint julips on my front porch. ( well couldn't be much worse anyway)
At any rate have just had infusion changed to ketamine only - we will see. The lack of conseus drives me nuts too , that is just talking about nerve pain and not even the other weird stuff.The Sativex spray has just been passed for MS pain here in AUS so I suppose it would be a possibility with a little push and a prod to get some for EM , again silly isn't it.
My sister has in recent years ( well before recent injury ,not related to that) had very painful gastro issues. This has been like bad cramps, very bad bloating. She had to go to ER for pain relief and all that was found was huge baloons of gas up under diaphragm but no blockage .Many tests done no probs detected even gluten intolerance, or other typical digestive issues. I am now wondering if it is EM , but she has no external manifestations at all.Just dreadful abdo pain for no apparent reason - possible???
Will report after Ketamine alone has had some time - goodnight Miss Maddy
mads said:@Tizzy. Dearest Miss Tizzy- my beloved friend, how are you feeling today? Is it helping you? You think its 'reset' the wiring?
@everyone.Ketamine debate. Found opposite here in UK. My experience is lidocaine preferred over Ketamine. I have lidocaine intravenously. My specialist says opposite about ketamine - although admits lidocaine cardiotoxicity risk I mentioned baxter pump because its subcutaneous and can be administered by patient at home. They teach you how to use it , of course. Its worth a shot seeing if they allow. - although would be much diluted. I know of a couple of cases UK allowed baxter pump lidocaine for localised pain. Unfortunately for systemic /widespread you need an IV or i would be needles everywhere like a pin cushion .
Really angers me how we are all treated so differently,such a lack of consensus even nationally!. Only thing Dr's seem to agree on is the firstline treatment - gabapentin/pregabalin, aspirin, amitrytiline. Great we got community like LWE and associations like TEA where we can pool resources, share information , support each other and try to educate the medics.
@Nel - you will be fine at Royal Free. They are real specialists - bless you. We are all thinking of you. Havent they offered you Iloprost IV ?
@Veerla. If not IC - look at ANS dysfunction. My entire body affected now. Whats your blood pressure /pulse like? low? Do you get gastro problems too. I remember you mentioning colic pains - cramps didnt you? People are not aware that EM can be systemic both external and internal.Organs are definitely affected. Myself and Alina have systemic - its never ending. BTW- Alina has tried medical marijuana if you want to ask her about it :-) UK its not legalised so you have to beg for the awful spray version (on prescription), or go purchase the naughty way ;). Holland - you are SO lucky lol!. Uploaded IC info for you. Had it in my library.
Wishing you all a 'comfortable' night dear friends
God bless
x
IC and the potential role of Gabapentin
Ketamine versus morphine in pain.
http://www.medscape.com/viewarticle/842948?src=wnl_edit_tpal&uac=222157BT
Hello, I am glad you are finding some relief from the ketamine infusion. I have not previously heard of this. I do so hope this treatment will prove helpful and lasting to you. Best wishes, Katriona
Hi Tizzy.
I wondered what had happened to you. I really missed your posts--they were always so informative, evidence-based and compassionate. I wish you all the best--hopefully your neurons will re-set and you'll have less pain. Thinking of you.
Dragica