Rant and Rave, Cry and Complain

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Originally Posted by DarkestDarkness

Yes, it does have horrible effects on the side of physical addiction.

Although I have not personally been on it, I knew someone that took it for the same problems I have (pain/fatigue) and it actually made them much less functional. It was horrible to see how they seemed to be worse on it than not on it... Many people with conditions like mine have "brain fog" regardless of being on any meds or not, so for us that risk is sometimes acceptable, but the aspects of physical addiction in general are probably underplayed by doctors, I imagine.

Edit: The worst about that person was I couldn't find any way of convincing them to come off it. They were too afraid of feeling even worse for stopping. I don't know how they are now, but they weren't well at all last I saw them.

One of the medications I take now works in a different way despite working in a similar "area" of effect, and doesn't have quite so many horrible effects, at least based on my own experience and discussions with some people who had it too. But I think my medication is much more expensive than Gabapentin, so it's likely Gabapentin gets prescribed first in many of the applicable cases.

You should try asking your doctor for alternative medications to rule out nerve problems, because they exist, but may simply be more costly. Unfortunately, with any of these type of things, many of the potential side effects are the same between the medications that treat certain issues. You know, even anti-depressants can cause... depression, among other things. Certainly one I was on once did make me feel worse overall, one reason was because it made me put on weight and affected my self-image.

It's just luck of the draw with how your own body responds overall sometimes and you have to weigh whether potential risks are worth it versus what's supposed to be treated. Essentially what you did now. :D

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Thank you for sharing your experiences. I definitely got a bit scared last night after reading some horror stories of various people who've taken it. Apparently it also commonly causes intense nightmares. I'm just scared. If it was just my ear - I wouldn't care. Put a heating pad on it and take 2 advil, in 1 hour I'll be ok. My back sciatica though, that's really annoying. When it triggers it can be hard for me to walk (at night anyways), and lasts several days or longer. My GP seemed to think it was a muscular issue affecting the nerve, and I believe 5 years ago I got prescribed the same medication for it, but I never took it. At some point I may need to try something.

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Originally Posted by Voldmer

With this talk about nerves, and Gabapentin, I'll just throw the name "Lion's mane" in there for your contemplation. It's a medicinal mushroom (not a psychedelic one) which has been found to be highly beneficial in regenerating nerve tissue, and boosting memory. It has also been used by DV'ers (myself included) for dreaming purposes (better dream recall). Unfortunately, it is also a highly valued delicacy.

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Thank you for bringing this up. I actually have some, but I've mostly forgotten about it. It's in the powder form. I haven't taken it much because I got scared about heavy metals and lead content possibly in it (it's a phobia I have). I guess you could say I also freak out about medications. I think this is safe though. I'd like to try it again. :)

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Originally Posted by DarkestDarkness

Yes, it does have horrible effects on the side of physical addiction.

Although I have not personally been on it, I knew someone that took it for the same problems I have (pain/fatigue) and it actually made them much less functional. It was horrible to see how they seemed to be worse on it than not on it... Many people with conditions like mine have "brain fog" regardless of being on any meds or not, so for us that risk is sometimes acceptable, but the aspects of physical addiction in general are probably underplayed by doctors, I imagine.

Edit: The worst about that person was I couldn't find any way of convincing them to come off it. They were too afraid of feeling even worse for stopping. I don't know how they are now, but they weren't well at all last I saw them.

One of the medications I take now works in a different way despite working in a similar "area" of effect, and doesn't have quite so many horrible effects, at least based on my own experience and discussions with some people who had it too. But I think my medication is much more expensive than Gabapentin, so it's likely Gabapentin gets prescribed first in many of the applicable cases.

You should try asking your doctor for alternative medications to rule out nerve problems, because they exist, but may simply be more costly. Unfortunately, with any of these type of things, many of the potential side effects are the same between the medications that treat certain issues. You know, even anti-depressants can cause... depression, among other things. Certainly one I was on once did make me feel worse overall, one reason was because it made me put on weight and affected my self-image.

It's just luck of the draw with how your own body responds overall sometimes and you have to weigh whether potential risks are worth it versus what's supposed to be treated. Essentially what you did now. :D

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Lyrica (pregabalin)? That one is C rated so I would think it had a bit more addiction possibility. I would consider either very unlikely of causing dependence one would have much trouble overcoming. You just taper a person off over a month or so if they have been on high doses.

Some anti-depressants are also effective against nerve pain such as nortriptiline or cymbalta.

If you read up on the "possible" side effects of any medication you would likely think they are all scary. They list every complaint that can happen even if the likelihood is very small. I generally consider lower dose gabapentin to be well tolerated, and the foggy head thing is the main problem that comes up on high doses. I would not want a foggy head, but maybe if I was in chronic pain it would be worth it if it helped with that.

True, they all have side effects. I'm very cautious about medications, though, and honestly, I don't think that's a bad way to be. I don't trust pharmaceutical companies too much. Or doctors. I think their primary goal is making money. Plus, I think we're an over-medicated society. Not to invalidate - I know sometimes people really need the medications, and I get that. But I can't tell you how many times I've been thrown a prescription (without any warnings) that wasn't really all that needed. They hand them out like candy it seems. I definitely want to try natural methods first, for as long as I can. The medication will be a last resort.

One thing that is disturbing to me is that many brain chemistry-altering drugs [not gabapentin thankfully] are linked to increased Alzheimer's risk, even simple antihistamines.

In reply to Sivason: That's the one I was mentioning specifically, yes, but I also imagined there could be other alternatives I'm unaware of, too. I also did not want to mention it by name because it's not really my place to make recommendations in either direction, though I suppose re-reading my previous post it read with a certain bias and perhaps overly assertive where it shouldn't have been so. My experience and that of those around me is anecdotal, I do realise this and can only hope others make that assumption too.

If I sounded over-cautious as well it's because as a rule of thumb I still think the best thing to do when people have doubts about this sort of stuff is to try and discuss it with whoever is giving them treatment.

Could you explain what a C rating signifies. I am not familiar with the system you're mentioning; or you could drop a link or PM one about those ratings and I'll be happy to do further reading on it that way. :)

And I agree, I can't really think of any medication that doesn't have a lot of "possible" side-effects as you say. I haven't been unwilling to try a medication I've never been on before simply based on what others have told me about it, generally I'm just open to trying whatever a therapist recommends and just see how things go. I'm almost certain I've had bad reactions with stuff which people I know have had, while they were perfectly fine with it and vice versa, I've not had any bad reactions from stuff others did.

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Originally Posted by DarkestDarkness

In reply to Sivason: That's the one I was mentioning specifically, yes, but I also imagined there could be other alternatives I'm unaware of, too. I also did not want to mention it by name because it's not really my place to make recommendations in either direction, though I suppose re-reading my previous post it read with a certain bias and perhaps overly assertive where it shouldn't have been so. My experience and that of those around me is anecdotal, I do realise this and can only hope others make that assumption too.

If I sounded over-cautious as well it's because as a rule of thumb I still think the best thing to do when people have doubts about this sort of stuff is to try and discuss it with whoever is giving them treatment.

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I hope you don't mind me saying this, but you did not come across as overly assertive to me at all. Besides, I would say, you have every right to think the way you do, based on your life experiences. I do understand your perspective is based on anecdotal evidence. That's okay. I am thankful that you and sivason did make recommendations - it's something I can bring up to my doctor if needed.

C rating is what makes a drug Controlled in USA. It is illegal to own them with no prescription. They are rated 1-5 with 1 being illegal drugs. 2 drugs highly regulated like pain pills, all the way down to 5. Lyrica is a 5. 5 is basically things that are sometimes but rarely abused. Apparently some people like the feeling the Lyrica causes, so they may take it with no medical need. Not anything to worry about.

Sorry you do not trust doctors. They get paid the same whether they prescribe medication, therapy or alternatives.

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Originally Posted by sivason

C rating is what makes a drug Controlled in USA. It is illegal to own them with no prescription. They are rated 1-5 with 1 being illegal drugs. 2 drugs highly regulated like pain pills, all the way down to 5. Lyrica is a 5. 5 is basically things that are sometimes but rarely abused. Apparently some people like the feeling the Lyrica causes, so they may take it with no medical need. Not anything to worry about.

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Right, I am familiar with the controlled drugs concept but didn't know the terms or how it worked exactly for you guys over there, thank you for the overview.

To be honest I don't get any side effects from it myself, not even that feeling you mention people supposedly enjoy. I was actually a bit surprised when I read about it being a thing with Lyrica and that people would abuse it for that purpose, since I'd never had that effect from it myself. I only found that out last year while reading up on it the medication again and I've been on it for years now. Maybe it's because I've always been on a low dose.

I guess this leads me on a little bit of a rant from me now on this subject. My doctor would rather I was on a higher dose but I get enough help with the pain like this and taking a higher dose would just mean it would be unaffordable... I imagine that medications probably do take a complex production chain to reach a finished product but I can only wonder how much margin there is sometimes. It sucks that medication that allows me to actually be more normal and functional happens to also be (what I consider) expensive.

But I just accept that it's how things are and at least I do think it's fortunate that there is something at all for many conditions these days.

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Originally Posted by MoonageDaydream

I hope you don't mind me saying this, but you did not come across as overly assertive to me at all. Besides, I would say, you have every right to think the way you do, based on your life experiences. I do understand your perspective is based on anecdotal evidence. That's okay. I am thankful that you and sivason did make recommendations - it's something I can bring up to my doctor if needed.

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I'm glad to hear that and thank you for the reassurance; I do hope your issues subside or get under control as much and as soon as possible. :)

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Originally Posted by sivason

Sorry you do not trust doctors. They get paid the same whether they prescribe medication, therapy or alternatives.

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I wouldn't say that I don't trust them entirely, certainly with time I might. But I don't trust blindly. I like to think I just have my eyes open. There are situations where doctors get kickbacks or other benefits for prescribing certain medications. And you see this sometimes, when you enter a doctor's office (especially the dermatologist, in my experience!). They push certain products over others, and definitely over nothing - there are reasons they do this. Here's an interesting excerpt from an article I found:

Spoiler for Article:

In 2010, President Barack Obama signed into law the Physician Payments Sunshine Act, which required disclosure of any payment over $10 to medical professionals from pharmaceutical, insurance, or other providers seeking reimbursements under Medicare, Medicaid, and Children’s Health Insurance Program (CHIP).

The first batch of disclosures involved 2012, which quickly illuminated the amount of money that was being paid to medical professionals for a variety of reasons, whether royalties for devices they invented to speakers fees and accommodations to attend conferences.

Those records are searchable for free on several websites:

Centers for Medicare & Medicaid Services
ProPublica’s Dollars for Docs
Association for Medical Ethics

The payment data made available by the Sunshine Act, coupled with reimbursement claims from federal healthcare coffers, helped authorities see prescription patterns, some of which showed the more a doctor is paid, the more often he or she would prescribe drugs pushed by those visiting their offices or paying consulting fees.

Or, as the nonprofit investigative reporting organization ProPublica found, “doctors who received industry payments were two to three times as likely to prescribe brand-name drugs at exceptionally high rates as others in their specialty.”

I hope you don't take this the wrong way. Honestly, I hope I am wrong. But - I will have my eyes open, and think independently as much as I can. I think it's very important to question, to think for ourselves, and to not trust blindly in a system or a person. You know what I mean?

Tara, our horse was loose early this morning. The sun was just coming up. She came running out of our woods and stopped right in front of me. I swear she is parting with the deer. :D

Rant:
Christmas has come:huh2: I mean... Spring, but we have a snow storm here instead of sunshine youth with butterflies:whyohwhy:

Being very proactive with my dad (and myself) about preventing Alzheimer's.. and so far he is letting me (:shock:). He's been very patient and letting me make him green tea and lion's mane tea everyday this week. Now, I'm afraid to ask him, but I'd like to get him taking choline, omega-3, and vitamin B supplements. I think I'd be pushing my luck. I can't believe he's letting me do as much as I have, but I am very grateful. Normally he is very stubborn.

The crappy thing is his DNA test says he has the APOEe4 gene. Considering my uncle (early onset) had it and possibly my grandmother (Edit: she had dementia but not necessarily Alzheimer's), it's not a surprise. I went ahead and ordered a DNA test as well, so I can know my risk. Better to start preventing it earlier rather than later. *Shrug*

Quote: “Those who inherit one copy of APOE-e4 from their mother or father have an increased risk of developing Alzheimer's. Those who inherit two copies from their mother and father have an even higher risk, but not a certainty. An estimated 20-30% of individuals in the U.S. have one or two copies of APOE-e4; approximately 2% of the U.S. population has two copies of APOE-e4.” He has the double recessive. :(

Some good news.. apparently ketogenic diets are good for preventing it. And I'm sure lucid dream practices have to be good too (too bad I can't get my dad into that...).

Had a really great day today. Played strategy board games with my group (kicked their butts :laughhard:), then went over to my brother's new place for a family dinner. Jammed as usual. :rockon: We had a great time. :)

I was zipping up my friend's dress and Moxie our Goffin Cockatoo looked around for his zipper like to say, "Where's my zipper?" Then I asked him if he wanted me to zip his feathers up and he answered with, "No thank you!" I was dumbfounded because he knew what I meant. Silly Bird. I think he was afraid that his feathers would get caught in the zipper or something.

Went to a doctor's appointment, they drew blood and I fainted. Slid out of the chairs I was in.

Yikes, that is scary.


I went to the dentist the other day. As usual, most of my teeth are great. I don't have any cavities or anything. But the xray of my front left tooth, the dentist said something is very wrong with it. "Internal resorption". He said I must have hit or bumped it, it's the result of a trauma. But it doesn't hurt, and looks completely normal. :( :( He said it has to be extracted. Oh my god. My front tooth. And an implant put in. Not even a root canal can be done. All I remember is that a few months ago I was undressing and my moldavite necklace hit me on the tooth very briefly. It hurt for all of 1 minute. I dismissed it. But it was that tooth.

I'm really upset about it, but I'm coming to grips. I'm so worried I will look funny. And you know? Just last year when I went to the dentist, he said I have some of the most beautiful teeth he had ever seen. I take a lot of pride and take care of them. I am so sad.

I think I will not do anything right now, because it's not bothering me at all. And it doesn't look any different. Although I go to see the endodontist in a couple weeks, and see what he says.

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Originally Posted by HumbleDreamer

Went to a doctor's appointment, they drew blood and I fainted. Slid out of the chairs I was in.

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Hopefully you are feeling better now; has that ever happened to you before?

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Originally Posted by MoonageDaydream

I'm really upset about it, but I'm coming to grips. I'm so worried I will look funny. And you know? Just last year when I went to the dentist, he said I have some of the most beautiful teeth he had ever seen. I take a lot of pride and take care of them. I am so sad.

I think I will not do anything right now, because it's not bothering me at all. And it doesn't look any different. Although I go to see the endodontist in a couple weeks, and see what he says.

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There's some twisted irony with these things... Just a few days ago my partner had a tooth crack/chip off, and it's one with a filling which the dentists have previously flagged as having "a strange black spot" a while back, but they did nothing further and suggested nothing either.

My partner takes good care of their teeth too just like you and certainly a lot better at it than I am. It makes me a bit upset on some level that basically accidents still happen to the most careful people. I think I feel this way because it feels unfair, to me. I think that's why I've stopped caring about some things quite so much over the last few years. I am still careful about lots of things, but for other things, I've realised the extra effort just isn't worth it. It really depends on what it is, but I guess I feel like I've wasted a lot of worry and time over the years about miniscule things but I guess that's why people say "live and learn".

Anyway, I hope it doesn't come to having an implant but maybe try and be prepared for it if you can. :( I'm sure it would look fine honestly, they're pretty good with that these days I think. It'd be the cost I would worry about, personally.

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Originally Posted by MoonageDaydream

Yikes, that is scary.


I went to the dentist the other day. As usual, most of my teeth are great. I don't have any cavities or anything. But the xray of my front left tooth, the dentist said something is very wrong with it. "Internal resorption". He said I must have hit or bumped it, it's the result of a trauma. But it doesn't hurt, and looks completely normal. :( :( He said it has to be extracted. Oh my god. My front tooth. And an implant put in. Not even a root canal can be done. All I remember is that a few months ago I was undressing and my moldavite necklace hit me on the tooth very briefly. It hurt for all of 1 minute. I dismissed it. But it was that tooth.

I'm really upset about it, but I'm coming to grips. I'm so worried I will look funny. And you know? Just last year when I went to the dentist, he said I have some of the most beautiful teeth he had ever seen. I take a lot of pride and take care of them. I am so sad.

I think I will not do anything right now, because it's not bothering me at all. And it doesn't look any different. Although I go to see the endodontist in a couple weeks, and see what he says.

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Sorry to hear that. They can do amazing implants now. No one will know.

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Originally Posted by MoonageDaydream

Yikes, that is scary.


I went to the dentist the other day. As usual, most of my teeth are great. I don't have any cavities or anything. But the xray of my front left tooth, the dentist said something is very wrong with it. "Internal resorption". He said I must have hit or bumped it, it's the result of a trauma. But it doesn't hurt, and looks completely normal. :( :( He said it has to be extracted. Oh my god. My front tooth. And an implant put in. Not even a root canal can be done. All I remember is that a few months ago I was undressing and my moldavite necklace hit me on the tooth very briefly. It hurt for all of 1 minute. I dismissed it. But it was that tooth.

I'm really upset about it, but I'm coming to grips. I'm so worried I will look funny. And you know? Just last year when I went to the dentist, he said I have some of the most beautiful teeth he had ever seen. I take a lot of pride and take care of them. I am so sad.

I think I will not do anything right now, because it's not bothering me at all. And it doesn't look any different. Although I go to see the endodontist in a couple weeks, and see what he says.

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Sorry to hear that, Moonage.

Modern dentistry is so advanced I doubt anyone will be able to discern the implant from a real tooth. I don't think it'll have any practical affect on your life. Still, I can of course understand your anxiety and frustration about the incident. It does sound very unfortunate.

Having issues with my computer. ERRRRR!! At least it is a flip pad laptop. Extremely busy....

Yeah, I'm okay. I'm usually good with needles and blood or broken bones. Not the first time I fainted. I fainted last year in my house. Around the middle of February. I didn't feel that well, I walked upstairs to my room then went to open the door and blacked out. Woke up with something imprinted on my forehead. It was there for days.

ANOTHER time, I was at my cousin's wedding rehearsal after sucking helium balloons and fainted in the middle of the rehearsal. My mom reminded me of this the other day. I was so embarrassed.

"Little" rant about something I haven't really been able to vent about for a while. It's just been on my mind on and off.

The other day, I was listening to the radio while helping my partner and a news came on about how doctors that are suffering from what is known as "long Covid" were feeling ignored by their professional peers taking care of them. They felt dismissed, ignored and entitled to treatment. They were also feeling like they were being called liars or fakers and whatnot.

This is probably the one of the most mean-spirited things I've felt or said in recent years, but I remarked to my partner about how now they could understand my frustrations and also the frustrations of many people in general with disabilities, especially so-called invisible illnesses and disabilities.

Though I wouldn't feel this way about any particular individual in the group if I knew them personally, as a collective group suffering from this issue I did feel a bit of "serves you right", a bit of "why should you get more attention than us". It does suck that they are having those issues because the symptoms they have to put up with very simply suck, as if getting Covid in the first place hadn't been bad enough for them. If they were someone I knew personally I'd probably try to support them with my own experiences as a basis, especially since they're also probably still dealing with their own stages of denial, which is a difficult part of any long-term illness, I feel. When I was first going through stages of denial, I didn't even recognise that I was or how my behaviour was altered by those stages.

In a way this rekindled part of my own past denial issues, and I suppose my upset with it all came from the fact that they felt entitled to being treated with respect and importance by their doctors; as if me and others hadn't been feeling this way for years... Everything they felt were things I'd already felt years ago. And hearing about this, it feels like you're in an endless queue, not by choice, and someone demands to skip ahead of the queue even though you've been there for longer, waiting, probably for years. I don't get any subsidised or governmental help, despite trying. I've never had special treatment from my therapists; some of the professional care I've received over the years simply hasn't been that helpful and I've accepted that there's not a lot more that can be done sometimes.

On the other hand, I hope there will be some net positive for everyone, hopefully some of them will reach out to communities of people with other invisible illnesses and disabilities and be able to promote awareness collectively.

Rave: Finally found something that I was looking for a long time:happyme:

It's been a weird couple nights. My allergies have been horrible, and the night before last I had another allergy attack (it's been almost every night now). I was laying in bed awake when I felt, like, a wave, the same feeling I get when about to pass out (like Humble, I also have had fainting spells - due to low blood pressure / orthostatic hypotension). Well. It was weird because I was already lying down. After that, I get this pain on the right side of my head, in my brain. In the back and behind my right eyeball. It was awful. Found out later it was a migraine. It lasted all day yesterday, and then last night it was still there. What the heck?? But my mom says it can be like that? This morning it was still hurting, and my eyeball felt like puffy and watery.

I'm wondering what caused this, and how to prevent it from happening again. My doctor last week said my blood pressure was too low. He wanted me to drink coffee. But I don't want to. I know guys aren't doctors, but you don't that could cause this, right? Or maybe it's the allergies? :whyohwhy:

I just turned 50 yesterday! That is a rant and a rave.

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Originally Posted by sivason

I just turned 50 yesterday! That is a rant and a rave.

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You have the same birthday as me, cool! (I turned 30 yesterday). Anyway, happy birthday :)

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Originally Posted by MoonageDaydream

I'm wondering what caused this, and how to prevent it from happening again. My doctor last week said my blood pressure was too low. He wanted me to drink coffee. But I don't want to. I know guys aren't doctors, but you don't that could cause this, right? Or maybe it's the allergies? :whyohwhy:

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It does sound like a migraine though puffy eye is odd but could be allergies as you say. Really severe allergies can be really difficult to deal with. My thinking is that he wanted you to drink coffee to check whether your blood pressure being raised a little would prevent the issue or not. Could be that coffee is possibly safer not to mention easier/cheaper to try, versus taking some medication that would raise blood pressure.

Is there any specific reason you'd rather not be having coffee, even for a short time? I imagine he'd just like you to try it so as to help diagnose if the issue is caused by blood pressure being too low or not.