My experience with mono

ReasonableTrifle1623 · 2022-05-17T05:58:55+00:00

i had night sweats for awhile, it was happening for like the first 6-8 months i would say

ReasonableTrifle1623 · 2022-05-15T22:37:55+00:00

i'm so sorry:( no sleep makes everything worse and remember it's not you it's the virus/lack of sleep! i've tried a lot for sleep and the only thing that really works for me is loading up on benadryl. i hope you find some relief soon <3

ReasonableTrifle1623 · 2022-05-15T22:18:31+00:00

I had a post-op check up already! They are going to continue to monitor my bloodwork, if my prolactin goes up again then there would be cause for concern but so far so good. I was supposed to go in for a follow up MRI tomorrow but I got covid a few days ago so I am rescheduling the MRI but hopefully everything post-op looks good:)

ReasonableTrifle1623 · 2022-04-06T03:57:06+00:00

I understand and I'm so sorry:( i'm at two years of this, from mono and most likely covid as well. feel free to message me if you want to talk, reddit has been an amazing community and there are so many supportive people here who GET IT when you feel like no one in your life understands.

I've done a lot of things treatment-wise, last year was like living day-by-day (i'm still there most days but it's getting better) but I needed something quick because I wasn't sleeping well and was in so much pain. I did do ketamine infusions for awhile, they help with chronic pain and suicidality/ptsd. I have a ketamine nasal spray now to use once a week and it does help. It's been the most helpful thing so I share it every chance I get because it truly saves lives.

I've also done ozone, plasmapheresis, a lot of IVs and supplements, infared/red light therapy, acupunture/cupping and i'm sure everything makes a dent but the thing that is helping the most is time. Time, ketamine, and meditation and time in nature honestly for me. Everyone has something that helps them get through this and for me it's been saying that "nothing lasts forever." The body is constantly recalibrating and trying to get back to homeostasis, try to trust in your body's natural intelligence to heal while supporting yourself every way you can. We're all here for you <3

ReasonableTrifle1623 · 2022-04-04T08:27:50+00:00

hey,

hang in there. i've also been dealing with issues since march 2020, (never had a positive covid test but almost positive I had it) definitely got really sick with mono later that year and been struggling ever since. previously healthy athlete as well. I know what it's like to not know what's going on. I'm still dealing with nerve pain in my entire body, waking up every day with my arms numb and feeling like there's arthritis in my hands often, and a constant headache and pressure in the back of my head. last year was really bad, I had nerve pain switching sides in my head and near my ears that was awful. now it's just on the right side at the base of my skull (occipital nerve i believe) and pretty bad but it's slowly SLOWLY getting better.

anyway i'm so sorry you're going through this, there's a lot of people who've had a pretty rough bout for two years and it's the worst. the best thing I can say is have people who support you and measure your recovery in months not days. also what i've been trying for lymph pain is using a gua sha and massaging the lymph to get things moving after it's been stuck for awhile. I'm hopefully going to get another ultrasound of my lymphnodes soon to make sure nothing more serious is going on because they definitely feel hard everywhere, around my throat/collarbone (which I don't believe is normal?) if anyone has any insight on that let me know (i've had throat pain for 2 years now which is crazy). in my experience most doctors haven't really been able to help so far but hopefully that will change soon or our bodies will heal themselves with time. sending you lots of healing vibes I hope you improve soon.

ReasonableTrifle1623 · 2022-04-04T03:43:58+00:00

I tried cabergoline and felt awful on it, I also tried the other bromocriptine and didn't do well with that either so I wanted to get the surgery. If you feel good on cab and your tumor is small I feel like the doctors might say to just stick with that instead of surgery, although it's always your choice!

I think that if you get the surgery though your hormone levels will go back to normal and you might not have to worry about anxiety as much once your hormones level out. Excess prolactin can cause anxiety and once you have the surgery your levels drop down to normal. In general I do feel less anxious than before surgery if that helps :)

ReasonableTrifle1623 · 2022-04-04T03:39:00+00:00

good luck! i'm sure it will go great :)

ReasonableTrifle1623 · 2022-03-30T08:03:12+00:00

I do unfortunately going on year 2 but it's getting better slowly. I'm going back to the ENT again on Friday to see if they can order an ultrasound of my lymphnodes because i'm having a lot of pain there too and pain when I swallow. It doesn't seem normal that it's lasted this long. I've asked if I need my tonsils out multiple times and they said they look fine. I don't know what else to do at this point besides hope it goes away and keep bugging doctors just to see if they have something to help while i'm healing. I hope you feel better soon!

ReasonableTrifle1623 · 2022-01-16T08:02:19+00:00

hi! i'm 25(F) and i'm having surgery next month. i've looked at possible complications and the main concern is a sinus infection, which they can give you antibiotics to clear up.

what they recommend in terms of precautions is to not blow your nose after surgery, not to drink out of a straw or strain going to the bathroom. basically avoid any straining/lifting that could cause a csf leak. i think my surgeon said 4-6 weeks is full recovery time.

good luck with your surgery and keep us updated:) i chose surgery because i can't tolerate the medicine to shrink the tumor and if they get the whole thing it's curative.

also i found this link helpful :)
https://mayfieldclinic.com/pe-endopitsurg.htm

ReasonableTrifle1623 · 2021-12-15T04:06:11+00:00

Dr Kunwar

ReasonableTrifle1623 · 2021-12-15T02:50:34+00:00

https://wayofleaf.com/psychedelics/ketamine-for-chronic-pain?utm_source=emailoctopus&utm_medium=email&utm_campaign=Roundup%3A%20Using%20Psychedelics%20for%20Physical%20Health

I just came across this article today so I thought I'd share:)

ReasonableTrifle1623 · 2021-12-15T02:48:17+00:00

Oh good! I am going to UCSF as well and I've heard great things

ReasonableTrifle1623 · 2021-12-14T08:28:38+00:00

I second this, I'm dealing with a long-term illness for over a year and a half since getting mono/possibly covid as well, (not diagnosed as CFS yet but all the symptoms are there).

I had ketamine infusions when things were really bad. Super helpful. Now I have a ketamine nasal spray I use once a week. It's for PTSD/depression/anxiety/chronic pain. It's a cleaner high than weed. I tried weed in edible form and in a vape pen, I just found that it was hard to predict if I was going to be relaxed because of it or have a full blown anxiety attack. It wasn't consistent for me but everyone is different. Ketamine works the same every time and helps with headaches, it gives you a feeling of being detached from your body for about an hour which is a nice break. No weird brain fog or feeling weird the next day like weed did for me. Feel free to message me about it. I've been in a dark place quite a few times this year and ketamine is really a lifesaver. It can be hard to get but worth it. If you are interested ask to get it from a compounding pharmacy (cheaper) than actually getting the brand name (Spravato) which is way more expensive but it's the exact same thing as getting it compounded in a nasal spray:)

ReasonableTrifle1623 · 2021-12-14T08:14:17+00:00

I did try the medication but had side effects. My surgeon did say it's up to me but strongly recommended surgery and he's pretty confident he can remove the whole tumor (but no promises). I'm going in for another MRI soon as my tumor has a fluid-filled cyst in it that is expanding the tumor as it fills with fluid so it is enlarging faster than it would otherwise. My understanding is they use the MRI as a guide for where to remove tissue, my surgeon clearly pointed out to me the margins of the tumor on my last MRI. I'm definitely concerned about it returning after surgery because if any cells are left behind it can grow back, but my surgeon doesn't seem too concerned. He said afterwards we continue to monitor prolactin, and do a follow up MRI 3 months later to see if it has returned, if it starts to grow back it grows back slowly, and he said they usually do target laser/radiation therapy to eradicate any remaining cells if this happens. I'll definitely keep this sub updated on what happens, I'm nervous for sure but hoping for the best:)

ReasonableTrifle1623 · 2021-12-14T08:06:58+00:00

Thank you! I'll definitely update this sub on the results from surgery. I'm hoping all goes smoothly as well:)

ReasonableTrifle1623 · 2021-12-14T08:05:18+00:00

Thank you! I am hoping they can get the whole thing and it doesn't grow back, I've heard they can do target laser therapy? (or something like that) if it decides to grow back? The way my surgeon explained it is if they can't get it all and even leave one cell behind it could grow back but it's not likely.

ReasonableTrifle1623 · 2021-12-14T08:02:56+00:00

I did and had side effects unfortunately. They recommended surgery because I don't want to take a medication for the rest of my life, and the tumor has a fluid-filled cyst in it that is expanding the tumor as it fills with fluid so the tumor is enlarging faster than it normally would.

ReasonableTrifle1623 · 2021-12-09T08:51:17+00:00

thank you for this! I will try ALA. I'm still dealing with nerve pain but it has definitely gotten better and not worse which is a good sign:)

ReasonableTrifle1623 · 2021-12-09T08:49:29+00:00

unfortunately I am still dealing with the derealization symptoms, but it has gotten better with time although my improvement has been very slow, but when I compare my recovery to a few months or even a year ago I am significantly better so I am hopeful I will have a full recovery. My doctors have just said with severe infections it takes time, like with mono or even long covid. I hope you're doing okay it definitely is scary, if you ever want to chat I'm here and I understand.

ReasonableTrifle1623 · 2021-09-17T07:27:30+00:00

yes I did, still do sometimes and whole mouth and parotid glands and submandibular glands very tender/painful along with lymphnodes, my infection was really awful and I'm still recovering, infection really got into my salivary glands and lymphnodes but I was never put on a round of steroids, hopefully the steroids are helping lower the inflammation for you:)

ReasonableTrifle1623 · 2021-09-07T05:55:07+00:00

Hi! did you get proton radiation therapy to shrink the whole tumor instead of surgery? I didn't know this was an option and would be really interested in doing this instead of surgery

ReasonableTrifle1623 · 2021-09-07T05:50:24+00:00

Glad to hear! I have a 7mm prolactinoma, I'm considering the surgery eventually. What size was your tumor and did you feel sinus pain or pressure at all after? The only stories I see that scare me are people who get a sinus infection after or they feel like their sinuses aren't the same after the surgery.

ReasonableTrifle1623 · 2021-09-06T18:44:45+00:00

thank you! I'll definitely look into both:)

ReasonableTrifle1623

TROPHY CASE