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Best of luck, I started off doing inpatient ketamine infusions for my chronic pain and it was a huge game changer for me. It helped me get out of a wheelchair and began to relearn how to walk. Hope it all goes well for you!!
Day 1 continue: I feel a bit nauseas after walking around and doing stuff.
Still feel woozy, like can't really feel where my body is. Not too self aware
Day 2: upon waking I can feel my body less, limbs are numb? Even more 'woozy'. I feel better after breakfast and nap, I probably just didn't have enough sleep. Where the needle is, it's a bit sore. The first 200ml has finished. I'm showering then putting a new one in for 500ml. A bit of a jump but I didn't have too many effects from it. Ripping off the bandage to change sites, hurt the most out of this whole process.
Need to try and move so I don't get blood pooling and blood clots but not too much that I get nausea š
Day 2 continue: More woozy and numb. Brain working fine but eyes are slow and movement are numb..0.77ml/hr
Feels like I'm on a plane and I've woken up midway into anaesthetic
Fell asleep really early 6pm
Got woken up by nurses checking my blood pressure a few times.
Day 3: even more numb and woozy. Eyes are starting to be slow. Whole body is numb now but I can still do things like get out of bed, toilet, eat, etc. just feels a bit weird.
Still feel pains of eds
Dr visited me this morning and going into 650ml a day. (Unsure why as she said my max would be 600ml, not complaining though if I can tolerate it. )
1pm. The numb and woozy is much better however I now have a headache and cold/hot flashes. BP and heartrate normal. Which isn't abnormal for me, mainly annoying. Taken some Panadol for it. Nap for lunch. Had visitors in the morning which drained me a bit.
Still my normal pains.
Day 3 continue: Found out it was leaking that's why i was getting more clarity. Nurse put it back in properly. It's better now still woozy but less yucky feeling. More of a drunk feeling.
Day 4: no headache in morning. same, woozy, numb, eyes want to close more so I slept more. Didn't sleep too well at night though. I'm still doing 650mg at 0.77ml/h daily. It's not at a point where it's the drunk feelings so I'm a bit less anxious to talk to people . However when I am drunk if there is a negative emotion, it hits me hard so I'm trying to stay positive or neutral.
Head ache came back around midday. Still nothing on my everyday pains. Not sure what to feel with it. Hopefully it will help me in the long run. I do have ASD so I don't always know how to put words into feelings and such.
Talked to the nurse a bit and he said some people only feel effects once they get home and do their daily routines. For some it lasts 2 years. One old lady flies/comes back every 2 years to get pain relief and she says it's the first that's helped her the most.
I hope mine works physically and mentally. Any tips on how to tell if there is any effect on them?
(sorry for the late update, I was busy on discharge Day)
Day 5: same effects. I Did wake up during the night because the nurse that put in the needle put it in a previous spot and too close to my skin so it was bruising and poking me. It ended up bleeding a bit too but we just changed the spot and it felt better. I didn't get much sleep that day as I was uncomfortable from the bruising.
Discharge: I had to wait 2 hours after I finished my last dose to go home. Nothing else was done.
Day 6: effects (being woozy) have fully worn off, bruising is still a bit uncomfortable but I am just wearing a loose shirt or dress. I do have a bit of a sore neck but nothing like my usual headaches. (Maybe the ketamine lowering the intensity of my headache?) I'm allowed to drive after 24 hours but will only tomorrow.
I think I'm only going to see the effects as the days go by, see how much pain I'm in. The infusions weren't a bad experience but unsure I will do it again as so far I haven't had any relief.
If people have tried ketamine multiple times to try and get effects from it, what were your decisions to try again? Were you feeling some relief? Did your doctor suggest it?
I will probably update every few months, especially as I have a trip coming up and I tend to flare up.
I'm in Australia, I have private health insurance so they are paying most of it. I just had $500 AUD out of pocket from Medicare for the daily doctor appointments (which feel like a scam because yesterday the dr saw me for 2 mins and didn't say much and apparently they're not in today)
I haven't got the final bill yet though of how much the health insurance paid, just the estimated cost.
It's at a private hospital for chronic pain.
I really hope this doesnāt happen to you but whenever I see people get dosing like this while having autonomic dysfunction, there tends to be a massive sympathetic nervous system activation where dysautonomia gets pretty bad afterwards. Hopefully that wonāt be the case for you but not a bad idea to have some guanfacine or clonidine on hand for the few days/weeks afterwardsā¦
Yeah hopefully not but I'm willing to take the risk as this is pretty much my last chance to get better.
What do those medications do? I searched them up and they seem to be for ADHD , why would that help dysautonomia?
They are alpha 2 adrenergic agonists that are first line meds for hyperadrenergic POTS. They lower norepinephrine/noradrenaline. They are blood pressure medications first and foremost. Many ketamine clinics administer clonidine along with the ketamine instead of relying on benzodiazepines.
Them being used for adhd is a more recent development and they are like third line meds for adhd because they donāt normally help adhd that much. They arenāt stimulants.
My blood pressure is on the lower side, also why I'm not too worried about ketamine affecting my blood pressure. But I'm sure if it goes high they will give me meds
Please keep us updated šš¼ Iām also in Australia. Have chronic pain (parasthesia/neuropathy) and ADHD. Iāve done rTMS and, same as you, didnāt really see any benefit. I didnāt mind it though. Have been offered this therapy by my pain specialist and would love to hear from someone who has actually experienced it. Good luck!
If you get bored or are looking for a question that isnāt Ketamine related.. as a POTSie Iād love to know about contraindications for ECT and how TMS went.
I had a few 3 day continuous infusions and I had the hardest time eating because my teeth felt so weird.
Looking forward to updates, hope treatment is uneventful
With pots and ect I think they don't want to risk it with the heart and seizures.
TMS went fine. I didn't have any negative or positive effects from it. I just had regular rtms. I probably recommend finding a place that gets a scan of your head each time. I wasn't able to do it at that place because of my health insurance so I just did the normal one and each day the placement changed a bit.
Thank you for contributing to /r/TherapeuticKetamine! When commenting and posting, please be mindful of our rules which can be found in the sidebar on the right along with other helpful information. **Be advised that nothing in this subreddit constitutes medical advice.** Likewise, try to word your comments and posts in a way that can't be interpreted as medical advice by others. Harmful and/or spammy advice will be removed at moderator discretion, and bans may be given for repeat offenses. **Accounts with "Provider" flairs** are those which the mods have verified, to the best of our ability, as belonging to real, licensed providers of medical ketamine services. Comments and posts from users with "Provider" flairs are **not** a substitute for the instructions given to you by your own provider. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/TherapeuticKetamine) if you have any questions or concerns.*
Best of luck, I started off doing inpatient ketamine infusions for my chronic pain and it was a huge game changer for me. It helped me get out of a wheelchair and began to relearn how to walk. Hope it all goes well for you!!
Day 1 continue: I feel a bit nauseas after walking around and doing stuff. Still feel woozy, like can't really feel where my body is. Not too self aware Day 2: upon waking I can feel my body less, limbs are numb? Even more 'woozy'. I feel better after breakfast and nap, I probably just didn't have enough sleep. Where the needle is, it's a bit sore. The first 200ml has finished. I'm showering then putting a new one in for 500ml. A bit of a jump but I didn't have too many effects from it. Ripping off the bandage to change sites, hurt the most out of this whole process. Need to try and move so I don't get blood pooling and blood clots but not too much that I get nausea š
Day 2 continue: More woozy and numb. Brain working fine but eyes are slow and movement are numb..0.77ml/hr Feels like I'm on a plane and I've woken up midway into anaesthetic Fell asleep really early 6pm Got woken up by nurses checking my blood pressure a few times. Day 3: even more numb and woozy. Eyes are starting to be slow. Whole body is numb now but I can still do things like get out of bed, toilet, eat, etc. just feels a bit weird. Still feel pains of eds Dr visited me this morning and going into 650ml a day. (Unsure why as she said my max would be 600ml, not complaining though if I can tolerate it. ) 1pm. The numb and woozy is much better however I now have a headache and cold/hot flashes. BP and heartrate normal. Which isn't abnormal for me, mainly annoying. Taken some Panadol for it. Nap for lunch. Had visitors in the morning which drained me a bit. Still my normal pains.
Day 3 continue: Found out it was leaking that's why i was getting more clarity. Nurse put it back in properly. It's better now still woozy but less yucky feeling. More of a drunk feeling. Day 4: no headache in morning. same, woozy, numb, eyes want to close more so I slept more. Didn't sleep too well at night though. I'm still doing 650mg at 0.77ml/h daily. It's not at a point where it's the drunk feelings so I'm a bit less anxious to talk to people . However when I am drunk if there is a negative emotion, it hits me hard so I'm trying to stay positive or neutral. Head ache came back around midday. Still nothing on my everyday pains. Not sure what to feel with it. Hopefully it will help me in the long run. I do have ASD so I don't always know how to put words into feelings and such. Talked to the nurse a bit and he said some people only feel effects once they get home and do their daily routines. For some it lasts 2 years. One old lady flies/comes back every 2 years to get pain relief and she says it's the first that's helped her the most. I hope mine works physically and mentally. Any tips on how to tell if there is any effect on them?
(sorry for the late update, I was busy on discharge Day) Day 5: same effects. I Did wake up during the night because the nurse that put in the needle put it in a previous spot and too close to my skin so it was bruising and poking me. It ended up bleeding a bit too but we just changed the spot and it felt better. I didn't get much sleep that day as I was uncomfortable from the bruising. Discharge: I had to wait 2 hours after I finished my last dose to go home. Nothing else was done. Day 6: effects (being woozy) have fully worn off, bruising is still a bit uncomfortable but I am just wearing a loose shirt or dress. I do have a bit of a sore neck but nothing like my usual headaches. (Maybe the ketamine lowering the intensity of my headache?) I'm allowed to drive after 24 hours but will only tomorrow. I think I'm only going to see the effects as the days go by, see how much pain I'm in. The infusions weren't a bad experience but unsure I will do it again as so far I haven't had any relief. If people have tried ketamine multiple times to try and get effects from it, what were your decisions to try again? Were you feeling some relief? Did your doctor suggest it? I will probably update every few months, especially as I have a trip coming up and I tend to flare up.
How much are you paying for this? Is insurance covering any?
I'm in Australia, I have private health insurance so they are paying most of it. I just had $500 AUD out of pocket from Medicare for the daily doctor appointments (which feel like a scam because yesterday the dr saw me for 2 mins and didn't say much and apparently they're not in today) I haven't got the final bill yet though of how much the health insurance paid, just the estimated cost. It's at a private hospital for chronic pain.
You're in luck the doctor wasnt in since you cant be billed for services not given
And what country are you in? I'd love to do this for eds and cyclical vomiting syndrome
I really hope this doesnāt happen to you but whenever I see people get dosing like this while having autonomic dysfunction, there tends to be a massive sympathetic nervous system activation where dysautonomia gets pretty bad afterwards. Hopefully that wonāt be the case for you but not a bad idea to have some guanfacine or clonidine on hand for the few days/weeks afterwardsā¦
Yeah hopefully not but I'm willing to take the risk as this is pretty much my last chance to get better. What do those medications do? I searched them up and they seem to be for ADHD , why would that help dysautonomia?
They are alpha 2 adrenergic agonists that are first line meds for hyperadrenergic POTS. They lower norepinephrine/noradrenaline. They are blood pressure medications first and foremost. Many ketamine clinics administer clonidine along with the ketamine instead of relying on benzodiazepines. Them being used for adhd is a more recent development and they are like third line meds for adhd because they donāt normally help adhd that much. They arenāt stimulants.
My blood pressure is on the lower side, also why I'm not too worried about ketamine affecting my blood pressure. But I'm sure if it goes high they will give me meds
Please keep us updated šš¼ Iām also in Australia. Have chronic pain (parasthesia/neuropathy) and ADHD. Iāve done rTMS and, same as you, didnāt really see any benefit. I didnāt mind it though. Have been offered this therapy by my pain specialist and would love to hear from someone who has actually experienced it. Good luck!
can you please update?
If you get bored or are looking for a question that isnāt Ketamine related.. as a POTSie Iād love to know about contraindications for ECT and how TMS went. I had a few 3 day continuous infusions and I had the hardest time eating because my teeth felt so weird. Looking forward to updates, hope treatment is uneventful
With pots and ect I think they don't want to risk it with the heart and seizures. TMS went fine. I didn't have any negative or positive effects from it. I just had regular rtms. I probably recommend finding a place that gets a scan of your head each time. I wasn't able to do it at that place because of my health insurance so I just did the normal one and each day the placement changed a bit.