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  • Dowork123
    started a topic Every symptom completely gone for 6 hours

    Every symptom completely gone for 6 hours

    at 10:30am today I was on the phone with amazon customer service and all of a sudden, I began sweating profusely. I got extremely hungry, and when I hung the phone up, it was drenched in sweat. This is how my body has ALWAYS been up until 2 years ago. Then I noticed I had zero eye dryness...literally none. I haven't neede drops in 6 hours and I feel amazing. Not just my eyes, my depression, gone, I'm so happy, I'm thinking very sharply, I have so much energy. Something shifted...I believe this further indicates a thyroid issue. I finally feel like I am getting a handle on this. I'm also hepeful that if I take care of my thyroid, I can/will feel better.

    The only thing i changed...I started adding seaweed to my food because it's high in iodine and natural. I also started selenium 100mcg twice a day. I'm not sure if this is part of why I feel better...but I only use sea salt. Sea salt is not iodized...I'm literally taking in zero iodine...again, not claiming this is why I feel better, but just talking out loud. Maybe someone else can chime in that's had thyroid issues.

    Has anyone here been "cured" of dry eye by fixing their thyroid? I read, I believe, one thread of a person with hashimotos fixing their dry eye here in this site. Would love to hear from anyone out there with TED or floppy eyelid syndrome.
    Last edited by Dowork123; 03-Sep-2018, 12:43.

  • SAAG
    replied
    Originally posted by Dowork123 View Post
    DXM ... It is very good for pain. IIn lower doses however, say double your robitussin dose, itís great for pain. Iím glad itís working for you, way better than opiates.
    Yeah, I'm only taking 30mg 4 times daily, but it's enough to eliminate (or at least take the edge off) the burning sensation I get. I've considered trying prescription meds that are used for neuropathic pain, but am hesitant since I don't want to deal with withdrawal ever, nor do I want to risk some of the nastier side effects that could occur... if I ever hit my limits and can't deal with the discomfort any other way, I'll consider them, but hopefully it won't come to that.

    Originally posted by Dowork123 View Post
    I am Greek, I love Greek food.
    Greek food is so amazing <3 I just love it!

    Originally posted by Dowork123 View Post
    Been to Greece twice, never to Cypress...
    You should definitely add Cyprus to your to-do list then - it's quite lovely here, and very inexpensive.

    Originally posted by Dowork123 View Post
    I wirry about my future too....I smoke weed, whoís going to get that for me? Whoís going to roll the joint? Hopefully itís fully legal by then.
    Well, with the way things are going, I think there are decent odds it WILL be fully legal in our lifetimes. I've never tried it, but I do know that a lot of people swear by it for helping with pain and other things.

    Originally posted by Dowork123 View Post
    Itís craxy because havin my daughter has brought back all the abuse I faced. Itís very weird but Iím remembering abuse I totally forgot about as a kid. Itís acyually straining my relationships with my family because Iím remembering AND reliving all this pain. So itís like itís happening all over again. I wish I didnít have to do drugs to stuff that down.
    I'm sorry you went through that and are reliving those memories. That really sucks, to say the least :-( However, perhaps one day you'll find a way to cope with it that doesn't involve drugs... keep trying... you never know.

    I can only imagine how difficult it must be to stuff it down though...

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  • Dowork123
    replied
    The pillow in question...

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  • Dowork123
    replied
    UPDATE

    Wanted to post this for anyone else having issues with FES (floppy eyelid syndrome) or simply someone having an issue with their face on their pillow. I bought a memory foam neck bolster. I put this on top of my pillow and it keeps my eyes from mashing into my pillow. Itís so firm, when I do turn, itís usually my cheek or temple making contact. A pillow would cave in and surround my face putting pressure on the eye possibly pulling it open. This has helped me avoid that. I think itís worth a shot. I got mine off Amazon it says home goods on it. Mind you, this was the third one I bought and it finally worked out. I believe it was under 30 bucks.

    Also, I believe itís putting my head/neck in a better position to prevent apneaís. I do feel better Iín general on this pillow. Even if it gives me a sore neck, due to the stiffness, I donít mind. Because overall Iím feeling much better

    Itís has really helped prevent that papilary reaction from getting out of hand. When I sleep on my face/eyes, my right eyelid feels cramped and almost paralyzed. My left eye feels like thereís a needle scratching my cornea every time I move my eye. Itís weird how different the sensations are for the same issue. Anyway, hopefully this helps someone else

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  • Dowork123
    replied
    SAAG DXM is a super powerful dissociative. It is very good for pain. I remember in the 90s I used to go to raves. Iíve eaten well over 100 ecstasy pills. Maybe 3 of those wee fake and one of those was a DXM pill. I was high and dissociated from reality for 3 days. It was one of the most unpleasant experiences of my life lol. In lower doses however, say double your robitussin dose, itís great for pain. Iím glad itís working for you, way better than opiates.

    Glad thigs are turning around. Iím really really happy to hear that. I thought you were still doing pretty bad so that makes me feel good! I am Greek, I love Greek food. Been to Greece twice, never to Cypress...Rhodes, Crete, kalymnos, the mainland of course...great place. I prefer holland, just more my vibe. Itís the only place in the world, as a giant human, that I feel short lol.

    I wirry about my future too....I smoke weed, whoís going to get that for me? Whoís going to roll the joint? Hopefully itís fully legal by then. I wish I could quit all drugs...Iíve never been in a position in my life where I couldnít control the outcome at least somewhat. I want to lose weight, I do it. I want to gain weight, I do it. I want to learn, I read, etc. I cannot quit smoking pot and live a happy life. I hate that! I just wish my childhood was different. Itís craxy because havin my daughter has brought back all the abuse I faced. Itís very weird but Iím remembering abuse I totally forgot about as a kid. Itís acyually straining my relationships with my family because Iím remembering AND reliving all this pain. So itís like itís happening all over again. I wish I didnít have to do drugs to stuff that down.

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  • SAAG
    replied
    Originally posted by Dowork123 View Post
    I think Iíll sleep better once Iím clean. I wake up sweating at 2-3am sometimes, really sucks. I donít know how people are drug addicts for years, couldnít do it.
    Yeah, I agree. It'll take time for your body to adjust, but once it does, things should get better.

    Originally posted by Dowork123 View Post
    Im going to work on my training, I have to run. I need to strengthen my lungs, diaphragm, heart, etc. I think Iíll breath better at night. Itís like I get so relaxed my muscles just donít work. So odd.
    Sounds like a good strategy. Cardio is good for releasing endorphins too, which will have the added benefit of helping with the mental side of things.

    Originally posted by Dowork123 View Post
    I hope youre doing well. Have you been able to bounce back from this recent downward trend?
    Yes, things are moving in the right direction, which make me VERY happy. I got 2 full days of work in this week already, which was a joy - I think I'm finally on the right track after this year of total eye hell.

    The main things I added to my previous routine that have helped turn things around are dextromethorphan (for neuropathic corneal pain, specifically the burning I get), Natrasan spray twice daily (for MG's), a seriously crazy amount of blinking exercises (for my MG's), better-fitting moisture chamber glasses, Blephasteam goggles, and meditation etc. I'm also taking Sea Buckthorn Oil, but the jury is still out on whether or not it's doing anything. (Note for anyone else reading: this is NOT a list of ALL the treatments I am currently using or that i have tried... this is only the list of things I've ADDED in the past few months)

    When I get back to Canada in the summer, one of the first things I plan to do is go back on 100% autologous serum drops 4x daily. I also want to try Xiidra. I also plan on going back on a more strict anti-inflammatory diet back home. I'm not doing that diet yet because there are these strawberry tarts at the bakery down the street that I can't resist here... plus I can't give up the spanakopita (I'm in Cyprus)... so I figure I'll enjoy them for another 2 months since who knows if I'll ever find versions quite like these ever again, right? Might as well enjoy it while I have access to it. Oh, and the falafal place... that's another thing I can't give up since I only have 2 months left here to enjoy it. :-)

    I'm also trying to learn more about neuroplasticity research. My corneal nerves apparently grew back decently after LASIK - so in theory, I have the STRUCTURE needed to function properly.... but they don't appear to be working right. So I'm wondering if I can nudge them towards working better (ex. not being over-sensitive to stimuli such as wind; reduced burning; automatically blinking as often as needed to prevent excessive dryness, without me having to consciously think about it; stimulating my lacrimal glands, MG's, and goblet cells to do their thing BETTER etc). I have no idea what I might be able to do to influence these things... but am listening to audiobooks on the topic in the hopes of getting some ideas. If I'm lucky, I'll find some nuggets that may be of use to me - if I'm not lucky, I'll at least have listened to some interesting books. There is a lot of info on Multiple Sclerosis, strokes, vision loss, pain etc... but not much specifically dealing with corneal nerve dysfunction... so this line of inquiry I'm going on is a MASSIVE long shot that I expect will take years of reading (audiobooks), plus, trial and error for me to work through. But I have decades ahead of me... so clearly I have time to experiment and see what happens.

    I was telling my husband last night that the biggest thing that scares me about old age is being dependent on someone else to put drops in for me. People underestimate the amount of eye pain I'm in, and that makes them less compassionate. I worry about future 80- or 90-year-old me having caregivers that might not take my needs for frequent application of drops and careful application of nighttime ointment seriously. I wouldn't want to resort to something like assisted dying in old age merely because I couldn't get the care I need to make my life live-able without intolerable eye pain. So I'm trying to ensure that when I do get old, I'll be able to afford a private, live-in caregiver of my choice if it's needed, AND do everything I can NOW to maximize my odds of my body staying fully functional until the day I die (so I can be self-sufficient and put in my own drops/ointment, even if I'm 100) Some people live a long time and are still perfectly capable of taking care of themselves - I need to make sure I'm one of them, because depending on strangers to care for me is not a risk I want to take. Healthy diet, adequate sleep, meditation, exercise - those are the 4 main pillars of my plan to put the odds in my favor (I realize it's no guarantee, but it's better than doing nothing hehe).

    I'm planning for the worst, and hoping for the best.

    There are other treatments that are less of a long shot on my to-try list, too... but they will have to wait.
    Last edited by SAAG; 13-Mar-2019, 05:41.

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  • Dowork123
    replied
    SAAG Thank you, yeah, the nights used to be good for me. I woukd wake up, smoke a joint, watch some tv or read and then go to bed. Now, like you, I dread waking up because itís probably not good. I really canít wait to be off these drugs, Iím hoping that helps. Iím still cutting the opiates, down to 12g and trying to get to 100mg then stabilize again. I think Iíll sleep better once Iím clean. I wake up sweating at 2-3am sometimes, really sucks. I donít know how people are drug addicts for years, couldnít do it.

    Im going to work on my training, I have to run. I need to strengthen my lungs, diaphragm, heart, etc. I think Iíll breath better at night. Literally as soon as I fall asleep, I stop breathing. Itís like I get so relaxed my muscles just donít work. So odd.

    I hope youre doing well. Have you been able to bounce back from this recent downward trend?

    Leave a comment:


  • SAAG
    replied
    Originally posted by Dowork123 View Post
    Want to throw this out there too. This last year had just killed me. I donít recognize myself.
    It is traumatic to go through this... it haunts you... it would change anyone.

    Originally posted by Dowork123 View Post
    I canít understand how this happens to a humans life.
    Life is a real b***h sometimes, that's for sure. :-(

    Originally posted by Dowork123 View Post
    But my hearing is going also now. I think itís from the drugs Iím was/am taking. The Xanax causes hearing loss, opiates cause hearing loss...Iím thinking possibly doxy as well.
    Okay, so keep doing what you're doing and try to slowly get off them eventually, if you can. It's good that you noticed something is going on, so you can react and manage the problem.

    Originally posted by Dowork123 View Post
    Yesterday I woke up crying and suicidal at 3am and cried for 90 mins straight planning my own death.
    Those middle-of-the-night wakeups are the WORST. I have had my darkest moments when lying awake unable to sleep in the middle of the night... it can get baaaaaaaaad.

    The weird thing about it for me is that I can go to sleep feeling pretty decent all things considered... maybe a bit concerned about the future or whatever, but not particularly focused on it. But then I wake up in the middle of the night and BAM! My thoughts get out of control, like a runaway train going to nowhere good.

    What works for one person won't always work for another, but in case this is of any help at all... I've learned to try and read lots of short articles during these sleepless times (short is easier for me since the novelty of a new topic every few minutes keeps my tortured mind more engaged and interested)... I scroll through Facebook (avoiding dry eye FB groups like the plague), and read news articles... I can't concentrate on fiction during these times for some reason... but real-world news is somehow doable. Sometimes I've lain there for 2 hours reading the news before I can finally shut off my brain and go to sleep. If the news doesn't work for me, I'll google chronic pain blogs... for some reason the feeling I get from reading about someone else who is going through a rough time (but is able to manage it) calms my mind - I don't know why - there is this one article I have bookmarked so I can read it if needed, when I wake up in one of these mental holes in the middle of the night (http://princessinthetower.org/tips-t...-chronic-pain/).

    When I wake up in such a state, it's like I wake up in the middle of a mental hurricane, and by the time I'm done reading for long enough, I feel mentally exhausted, but have a blank mind that's ready to sleep finally.

    Another thing I've noticed - and I don't know if this would be the same for anyone else - is that if I skip meditating, I'm WAY more likely to have these awful middle-of-the-night depressed episodes. So I'm trying to be really consistent and meditate for a minimum of 10 minutes twice a day (if anyone is wondering, I use Headspace). I have no clue why such a tiny amount of time meditating each day makes such a MASSIVE difference in my ability to cope with the mental side of dealing with this, but for some reason, it does. ** And if I'm feeling more worked up and stressed/depressed/anxious about this than usual, I often have to increase my time spent meditating... so maybe a 10 minute session earlier in the day, and a 20 minute session at bedtime (because during times of max stress/worry 10 minutes isn't enough to calm my mind).

    Anyways, I don't know if my coping strategies will help you... but sharing in case it does.

    Originally posted by Dowork123 View Post
    So Iím trying to get off and damn I will not be able to escape the pain of quitting.
    You know what you need to do... so keep working at it and eventually you'll succeed. For whatever it's worth, sending good vibes your way!

    Originally posted by Dowork123 View Post
    On a a side note, Ive been trying to spend my money and enjoy my time feeling good.
    I'm glad to hear it. The downs suck, but at least we can try to enjoy it when we're feeling good.

    Originally posted by Dowork123 View Post
    She became so much more loving. Itís like taking care of her during that time created this new bond. Itís as if she knew we saved her life. Anyway, sheís been hugging and kissing us on her own will. Sheís constantly sitting in my lap now. Itís really great. I love her so much. I wish I had kids earlier and more of them. Itís one of my few regrets in life. But my childhood was so bad I never wanted kids. I hate what happened to my life. Not fair to me or my family. Sorry just talking!
    My husband and my kids are what keep me going. I don't know if I could handle this without them. I'm glad you have your wife and daughter in your life!!

    This eye stuff sucks... and few people in the world can truly understand how bad it can be. It's so good that we have this forum!
    Last edited by SAAG; 09-Mar-2019, 09:06.

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  • SAAG
    replied
    Originally posted by Dowork123 View Post
    It seems any increase in blood pressure in the body will cause this. So Iím not sure...will going lighter help if it still increases my blood pressure? ... I donít even feel comfortable working out and I have to in order to sleep right.
    Physical activity is necessary, and good for you.

    The trick is to figure out a new, safe level of workout for your new situation.

    You'll still end up in far better shape compared to completely giving it up - I'm sure you can remain very lean and in excellent physical shape, although granted, your overall muscle mass will likely go down compared to where you're at now.

    My husband has high blood pressure (controlled on medication) - he does lighter reps, but more of them. He figures it's less taxing on his body and there's less risk of injury compared to lifting really heavy... but the end result is still great.

    Granted, I can't speak to your sleep issues... however, my suspicion is that with enough physical activity, there are decent odds you'll still sleep right, you just have to find the right mix. Maybe you'll end up spending MORE time working out at a lower intensity, to get the same results for your sleep. Either way, don't think the worst just yet... it's too soon... you have some experimenting you need to do.

    Originally posted by Dowork123 View Post
    Whatís crazy is I was getting signals this was happening. I think I was slowly pulling my retina from the eyeball. Because every tine I squat heavy or do a heavy leg press, I see shooting stars.
    Well, this could be reason for optimism then - it sounds like your body is indeed giving you a sign when you're pushing too hard - and it's GOOD that the sign is something you can perceive on your own since that means you can respond to it by easing off the intensity of your workout to avoid that sensation. Seriously, experiment with lower weight/more reps instead of higher weight/less reps. Pay close attention to how your body reacts... odds are you don't have to stop working out, but you just need to learn your body's limits and find a better balance.

    You've been working out for many years, right? Years of training have likely gotten you to the point where you're able to life more than your body was designed to lift... so now you likely just have to dial that down until you figure out a workout routine that's better suited to your body in terms of providing the benefits of working out, without crossing the line into straining it too hard. Trial and error - you can do this!

    Originally posted by Dowork123 View Post
    I need to take pressure after I do push-ups or something so no lie, Iím going to ask the doctor if we can check that.... how can I know what new training is safe without checking my pressure during the training session?
    Experiment - maybe you can go for a run near your doc's office, then come in and check your pressure. Maybe you can blast out push ups until you can't do any more, then get your pressure checked right after. I know neither of the above is a full workout...but they can likely provide clues as to what your limits are in terms of training without over-straining things.

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  • Dowork123
    replied
    Want to throw this out there too. This last year had just killed me. I donít recognize myself. I canít understand how this happens to a humans life. You guys know theveye stuff. But my hearing is going also now. I think itís from the drugs Iím was/am taking. The Xanax causes hearing loss, opiates cause hearing loss...Iím thinking possibly doxy as well. I dropped my opiate dose from 160-180mg to 120-130mg over the last three weeks. Yesterday I woke up crying and suicidal at 3am and cried for 90 mins straight planning my own death. So I took all my opiates at once and finally felt relief I havenít felt in 3 weeks. I understand why people donít quit heroin. It hurts so bad, I have taken opiates before, but NEVER for a year straight. So Iím trying to get off and damn I will not be able to escape the pain of quitting. I need to find kratom but itís illegal in my state haha. A safe drug that helps you quit opiates is illegal. Awesome!

    just ranting at this point. I donít know what to say or do. I go back down on my opiates today. Going to try 100-110mg and see if I can do that drop and then stabilize there. Once Iím taking 100mg consistently no issues, I will feel better. Thatís how I did with the Xanax too. Once I got back to my prescribed dose, the anxiety retracted and I could taper slowly. Itís like, knowing this is hurting me makes it uncomfortable for me to keep taking such high doses. I cannot just stop or I would. So I gotta pushbtjis taorr to get myself into a comfortable dosing routine.

    For anyone curious hereís how I quit opiates. I take both oxy and Vicodin. The oxy binds stronger to the receptor so I use the vicodin to quit. Hereís how...I replace some of my oxy dose 1 for 1 with Vicodin. So for example, if Iím taking 120mg oxy, I will replace 40mg oxy with 40mg Vicodin. That will allow me to withdraw, but not feel like Iím dying. Then, I reinstate the oxy at a lower dose and that helps me to feel better. So once I get past the intense pain, I replace 40mg Vicodin with 20mg oxy. That gives me a net drop of 20mg oxy and I can cycle this medication as I detailed above in 10-14 days. So my hope is I can be off in 3-5 months at this rate and also assuming there may be bumps in the road. Starting the pain again today. Ugh, itís 5am Iíve been up since 4am. Already took my oxy, 40mg and itís early, hopefully I donít get sick before noon. Once I get sick, itís so hard to swing back into feeling good. Itís better to take a dose that prevents the withdrawal from starting.

    On a a side note, Ive been trying to spend my money and enjoy my time feeling good. As I stated before Iíve been buying knives and now multitools. Like Swiss Army knives. Iíve gotten into collecting them. Itís sometjibg thatís really given me some joy since all this happened. Besides my daughter of course. My daughter is amazing. She had a 104 fever for two days and we helped her. It was hard listening to her scream but sonetning good came of it. She became so much more loving. Itís like taking care of her during that time created this new bond. Itís as if she knew we saved her life. Anyway, sheís been hugging and kissing us on her own will. Sheís constantly sitting in my lap now. Itís really great. I love her so much. I wish I had kids earlier and more of them. Itís one of my few regrets in life. But my childhood was so bad I never wanted kids. I hate what happened to my life. Not fair to me or my family. Sorry just talking!

    Leave a comment:


  • Dowork123
    replied
    Originally posted by SAAG View Post

    Is it ALL forms of weightlifting? For example, is it possible that lifting super heavy low reps will worsen your condition, but lifting lighter weight but more reps would be okay? Apologies if you've already looked into that... but figured I'd mention it just in case.

    If you haven't already done so, could be worth experimenting to see if it makes a difference in your eye pressure.
    It seems any increase in blood pressure in the body will cause this. So Iím not sure...will going lighter help if it still increases my blood pressure? Do I want to risk that? I need to take pressure after I do push-ups or something so no lie, Iím going to ask the doctor if we can check that. I just feel dumb. I think Iím helping my life but lifting weights helped to cause this. I donít even feel comfortable working out and I have to in order to sleep right.

    Whatís crazy is I was getting signals this was happening. I think I was slowly pulling my retina from the eyeball. Because every tine I squat heavy or do a heavy leg press, I see shooting stars. I thought that was oxygen deprivation from the intensity of the training. Now Iím thinking itís not, I think itís strain and pulling on my retina. I just donít know what to do.

    thats the other issue...how can I know what new training is safe without checjing my presssure during the training session?

    Leave a comment:


  • SAAG
    replied
    Originally posted by Dowork123 View Post
    It seems from my research that weightlifting is making this worse. I could go into details, but letís just say Iím certain that weightlifting is making my glaucoma worse. I donít know what to do. Iím so lost on all this.
    Is it ALL forms of weightlifting? For example, is it possible that lifting super heavy low reps will worsen your condition, but lifting lighter weight but more reps would be okay? Apologies if you've already looked into that... but figured I'd mention it just in case.

    If you haven't already done so, could be worth experimenting to see if it makes a difference in your eye pressure.

    Leave a comment:


  • Milo007
    replied
    Originally posted by Dowork123 View Post
    Hey guys, quick update and just some general thoughts. I decided to start researching glaucoma to understand whatís going on better. It seems from my research that weightlifting is making this worse. I could go into details, but letís just say Iím certain that weightlifting is making my glaucoma worse. I donít know what to do. Iím so lost on all this. I donít know how to live anymore. I thought what I was doing was healthy. I just hate myself sometimes. Why am I like this?
    Not your fault man. Don't curse yourself for all this. It's all poor genetics.

    Leave a comment:


  • Dowork123
    replied
    Hey guys, quick update and just some general thoughts. I decided to start researching glaucoma to understand whatís going on better. It seems from my research that weightlifting is making this worse. I could go into details, but letís just say Iím certain that weightlifting is making my glaucoma worse. I donít know what to do. Iím so lost on all this. I donít know how to live anymore. I thought what I was doing was healthy. I just hate myself sometimes. Why am I like this?

    Leave a comment:


  • Dowork123
    replied
    I touched the tip of a brand new bottle of serum this morning. I cleaned the top with an alcohol pad, let it sit for a moment, then poured out a ton of serum just to clear the entrance of alcohol. Iím going to use it for 24 hours then toss it. Iím such a predfectionist, when things like this happen I get so made because I HAVE to throw the bottle away. Itís not worth risking my eyes. Itís not the money either, itís driving to Chicago constantly. So ****ing annoying.

    second time in a month. I wish they would give me 5ml bottles and just give me more of them. If I mess up one bottle itís 6-9 days worth of serum trashed.

    Leave a comment:

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