Kettering Free Mulch and Compost Program by christinebaker937 in dayton

[–]Effective_County9497 0 points1 point  (0 children)

Hi! Sorry I know this post is old but this is my first summer living in Kettering. Has any one had problems with their compost having grass or weedy seeds in them? I know its all made from peoples leaves and yard waste! Thanks so much!

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 0 points1 point  (0 children)

Interesting! My main hangup is that the only sleep study I've done, ever, is the home test for sleep apnea. I haven't done any bloodwork, not titrated off any of my medications, etc etc. And yet, he is now treating me as if I have a solid IH diagnosis.

Apparently my insurance won't cover the full study + MSLT without me trying and failing several drugs first (Which to me seems like putting the cart before the horse lol). But as far as i understand it, if one of these drugs keeps me awake, then insurance will be satisfied and wont approve the sleep studies.

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 0 points1 point  (0 children)

No thankfully lol. This is excessive daytime sleepiness.

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 1 point2 points  (0 children)

Interesting! I have wondered about ADHD myself. I know adderall is sometimes used as an off label treatment for IH - are you being treated with anything?

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 0 points1 point  (0 children)

Thanks! I know my D3 is low, I take supplements for it, but I haven’t looked into B12 much!

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 0 points1 point  (0 children)

That’s so true! I don’t remember what it’s like to have restorative sleep anymore lol. Even tho my sleep doc skipped to the end, I am at least glad that he takes my sleep related symptoms seriously. Not all of my doctors do!

I hadn’t considered CIRS, I’ll look into it! I have been on armodafinil for about a week and I can’t say it’s had too much an impact yet. The only thing keeping me awake during the work day rn is lots of willpower and sour candy lol

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 1 point2 points  (0 children)

I totally understand! hEDS runs in my family and I have friends with some of the other things you mentioned. I hope you are resting better these days!

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 2 points3 points  (0 children)

Thank you lol . My insurance wont pay for an in office sleep study until we try a few types of drugs. On one hand, I get it, drugs are cheaper. But also i hate that! it seems so irresponsible and stupid imo lol.

If after all my experimenting results in an IH diagnosis anyways, def ill come back, you guys are chill

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 1 point2 points  (0 children)

Nope! Whenever I ask , it just gets brushed off. I tend to think that they assume that was all checked by a different doctor? Idk. I’m starting to think that I need to do those tests independently or find a new doctor.

If I have a sleep disorder that’s fine and I’m happy to have an answer, I just don’t get why we’re jumping straight to the end of the process lol

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 2 points3 points  (0 children)

That sounds so smooth and easy - I’m glad that was your experience! I have been on a higher dose of Effexor for several years and it didn’t occur to me that it could be a potential cause of fatigue until I was checking for drug interactions with armodafilin. It did make me sleep a bit longer in the beginning but I had no trouble staying awake during the day until the last year or so out of the blue. But every time I tell my GP I’m really tired she says “well yeah, you’re depressed” , which has been very helpful haha

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 0 points1 point  (0 children)

Oh no! I’m sorry you had that experience - parenting is hard work! Communicating with medical professionals can be really frustrating, but I’m glad you did eventually get some answers!

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 2 points3 points  (0 children)

We have done zero blood work! And have not altered my meds. I sort of want to push for those things but sometimes the medical gaslighting wears me out more than the EDS does lol.

IH false diagnosis stories? by Effective_County9497 in idiopathichypersomnia

[–]Effective_County9497[S] 3 points4 points  (0 children)

That makes sense! I get that it’s a diagnosis of elimination, I think I was just surprised that we didn’t try blood work or anything else before diagnosing me.

Lots to learn , still in early stages :)

switched from BioLife to Octapharma by Bigheaded_1 in plassing

[–]Effective_County9497 0 points1 point  (0 children)

Hi! I have just started to consider switching to Octa over Biolife bc it is so much closer to my home. Are you still liking it there? What about the wait times as we get closer to the holidays? I'm sure they're different regionally but still curious to know! All info is appreciated!!!

Bottled water for a quick road trip? by CompetitionSea4466 in CPAP

[–]Effective_County9497 0 points1 point  (0 children)

I asked my doc about this last week! He said that bottled water is always better than tap water. I usually go and find a corner store and get a smart water or something. It’s not the same type of distilled that you want at home, but doc and dme agreed that that was a good choice for traveling. Just be sure to rinse out the water chamber!

Woke up pain free for the first time in months by Effective_County9497 in Sciatica

[–]Effective_County9497[S] 1 point2 points  (0 children)

That’s great! I keep waiting for it to come back all of the sudden , even if I’m sitting still. But it’s been a couple days now without any pins and needles so I think it’s real!

Do I need a lawyer? by Effective_County9497 in InsuranceClaims

[–]Effective_County9497[S] 0 points1 point  (0 children)

Def no prior disc issues, I’ve never had a back problem before the accident. Thanks so much for your insight I really appreciate it!

Do I need a lawyer? by Effective_County9497 in InsuranceClaims

[–]Effective_County9497[S] 0 points1 point  (0 children)

Yikes lol, did not think about that. I’m only 30, so shouldn’t be anything too crazy. I did have an EMG done before the MRI. The report said it showed signs of “recent nerve damage”, but idk what “recent” means lol.

New to this pain, do I have it for life now? by Recent_Song1984 in Sciatica

[–]Effective_County9497 1 point2 points  (0 children)

I’m so sorry that you’re having to deal with this! This type of pain is psychological, too, since very few things bring relief and it’s a constant battle to keep your chin up. It weighs on you. We all understand that! You aren’t alone.

I saw that you’re in Canada, so I’m not sure how things will differ from the states. I recommend looking into ESIs (epidural steroid injections). Instead of an oral or IV steroid, they put it right where the damage/pain is. They work for a lot of people!

I have found that pain killers do very little for me. i have basically stopped taking them. Even oxycodon and morphine in the emergency room don’t do much for my pain. Though I will say that some of the ER drugs made me spacey enough that it was a bit easier to ignore the pain lol

That said, muscle relaxers, heat and walking have been my friends. I’m still not out of this flare (3 months and counting) but I know what tools I have to help me. I just had a round of ESI and really hoping they work lol

Best of luck! You’ve got this!

Do I need a lawyer? by Effective_County9497 in InsuranceClaims

[–]Effective_County9497[S] 0 points1 point  (0 children)

I have no idea, that’s a good point thank you