When I had my first 3 infusions it was a bit scary but, I was able to steer my mind away to better places. The 4th treatment I had a terrifying experience, so they gave me versed to get through it. They’ve slowed the infusion rate, with no improvement in my panic response. I’ve asked about lowering the dose but, my provider doesn’t want to do that. Anyone have a similar experience? Thanks in advance.
You haven’t said what dosage you were started at. Most clinics begin at .5 or .6 grams per kilogram of body weight, I believe. Dosages below that may not have the desired neuroplasticity effect afterwards. But I’m no authority.
One thing you might try is using soothing music to mold the experience. Choose something you know well and find to be spiritually guiding to you. Preferably, use some circumaural headphones to listen during the infusion, and make sure that your music extends long enough to make it through the entire infusion.
Hope this helps, and let us know how it goes. I almost didn’t go back after my first infusion, so I know that of which you speak. See it through if you can, because it does help.
Thank you very much. I’m working on my mindset before treatment. This process has shown me how fearful I am and it’s much deeper than I ever thought.
I had a similar thing happen what I did was concentrate on my breathing sort of like if I was floating in water. I was mindful of my breath and it brought me back to center. It didn’t intrude on what I was experiencing but it helped calm the panic.
I have had 8 treatments, on 2 occasions I’ve had to have the rate of infusions slowed down, I also have a “granny” (Granisetron) before the infusions. I also have upbeats light music, typically pop music that I like.
My first treatment was very frightening. They slightly lowered the dose and give me anti-anxiety meds during the infusion. It happened again the 7th time. Really awful. My therapist I see was not surprised. My brain is resisting. You are in a safe place during treatment with a Dr. who is caring for you. Try to be open. Definitely talk to them about it.
I’ve done research on what to expect & in that research, I was advised to think of a positive phrase to tell myself during the treatment. I currently use, “I wanted this & this is going to help me.”
I’ve also learned to just go with it & allow myself to be completely free regardless of what or where the treatment takes me and when I’m relaxed with music (preferably no lyrics) & definitely an eye mask. That way I’m just free & allowing my treatment to work as it’s supposed to. The point of the treatment is to essentially allow you to become dissociated, like an out of body experience & yeah some have been strange & a bit scary, but I just go with it & I’ve had amazing breakthroughs! I’ve got to have the right set up though! Eye mask so that you cannot see, relaxation, a blanket, comfy clothes and music which can sometimes be provided my the anesthesiologist, or noise canceling headphones if the music is too much.
I personally also pray right before, I pray for God’s will for me & the strength & power to carry it out. Then, I let go.
I’d be curious to know what your dose Is as well? Also, reminding yourself that you’re in a safe environment being supervised, and no one there will do anything to potentially harm you only help you & that it doesn’t last forever! Good luck!!
A technique I have used with good success when I have lost all body awareness is to simply think, “I am love.”, as in the context of divine love radiation. It seems to work…
Thanks, all, for your replies. I do listen to calming music, wear eye covers and try to keep my mind away from dark topics. I try saying different mantras but, the panic wins. The things I see are frightening and moving very fast. I get scared thinking maybe I deserve to see these terrible things. I’m going for a booster next week, and I’ve changed up my playlist. Hopefully it goes well. Best to everyone!
Hello Guys…I’m new Osmind and my 1st infusion tomorrow…does anyone recommend falling asleep?
It’s hard to explain, but an observer would think u were asleep. Your mind is quite busy tho. I try to meditate before I go in and have a goal I want to attract during infusion so during it I focus on that goal. Infusion is like a deep deep meditation that u may not be in total control of. It’s ok to not control it too much. But sometimes it can overwhelm. Soothing playlist definitely helps. Some of us have darker histories than others and that may come into play during our infusions. It may help to mentally let go and dissociate and just observe and mentally focus on changing the bad circumstances to what u would want them to actually be. Some ppl do have a panic response tho. Not the first I’ve heard of it and am not sure how to address it should it happen to me. But I definitely have better infusion experiences when I meditate before the infusion and keep myself in that mindset when it begins as much as possible. To me it is a spiritual medicine and therefore requires a lot of mental work and it may not always end up pleasant but perhaps sometimes we do need to see negatives in order to become stronger. I think if it happens, I may try to treat it as a lucid dream and start asking the dream questions: what am I supposed to learn? Are these visions symbols, can I better interpret how these visions relate to me? Trying to be as objective as possible. This is difficult to do if the panic is too severe tho. I have had panic attacks so I know how bad that is but it hasn’t yet happened during infusions. I hope such experiences can be overcome for those of u experiencing this. Are the results after the infusion satisfactory? In other words, is it worth the panic attack? I hope so. It concerns me that a person may feel like it’s more harm than good. I don’t want anyone to feel bad. Ugh I wish no one ever had to feel bad for any reason…
Thanks for all the info KetKat…heading to 1st infusion…2-3hr drive. Did anyone feel more hopeful than in a long time before the first one? And then question do I even need to do this? Ugh… Jim
Omg, that’s a long commute. Is someone driving u? I had to sign paperwork agreeing not to drive afterwards.
I felt hopeful because of all the research I saw and the interviews with patients in the press and the whole 80 percent or so success rate thing. My appointment was scheduled 2 weeks in advance. It felt like the longest 2 weeks of my life because I was clinging to this as a last resort. Now that I’ve experienced such enormous relief, in my opinion, it was absolutely necessary and is the only reason I’m even here typing this message. I thought I was not going to make it past October this year.
Best of luck today. I hope it is a peaceful experience, but if not, that u at least find relief afterwards.
Thanks so much…my wife is driving so I can keep calm and relax beforehand. I so want this for her as well…it’s been a long last 2 yrs and told her my last resort too as I can no longer go on this way and I know the hell it has been for her. Thanks so much KetKat for your responses/support. HUGS!!!
VirtuaHugs to u as well So glad your wife is helping you with this journey also. The more ppl in your camp, the better. Ppl generally tend to underestimate our pain, so it really matters when ppl are supportive. My positive thoughts go with u today.
Hi Surfsup…what can I say…what a wonderful experience for me!!! I asked if I could stay all day. LOL I have suffered for the last year and a half and told the wife I can NOT handle it anymore!!! God knows I am far from cured, but it was relief that was LONG overdue!!! Thanks for all your support out there!!!
Omg such a relief that it was positive for u. I wonder if there’s a way to help alleviate when panic happens tho. OP felt like nothing worked to deal with that. This might sound weird but sometimes during my infusions I switch the focus from healing myself to trying to heal others. I think I have too much empathy, if that’s even possible. I really dont like seeing people suffer.
Mornin KetKat…I think you are a very special person and as Surfsup said your words help a lot!!! …I am journaling my morning feelings which are LOTS…I just took a clonzepam to try and relax as I feel I panicked as I felt myself starting to stiffen up again(my wrists actually bend in). Trying to be positive but very scared at the moment as I dont journal and try NOT to rely on clonzepam for relief. Gonna take a 3 mile walk today and cant wait for tomorrow…my 2nd infusion.
I’m so glad I could help. It makes me feel better to be helpful to others in a similar situation. I hope your subsequent infusions were beneficial. Lots of times the amazing effect does not stick for the first time so that’s why there’s several rounds. I had to be on lozenges in between after my initials because my condition is that bad. But they work and I’m doing better than I ever have in 30 years, and I’m so grateful for my doctor dedication to helping people like us.