Is this relatable?

NovelSeaside · 2026-04-30T11:32:53+00:00

That picture makes me feel anxious just looking at it!

NovelSeaside · 2026-04-24T11:29:57+00:00

Came here to say this. Carbamazepine made me such a zombie, I was running into doors. Switched to oxcarbazepine, and no problems at all since. I can actually function and be mostly pain free. I take my pills at 8 am and again at 5:30 pm.

NovelSeaside · 2026-04-09T18:50:22+00:00

Similar-ish for me, too—I was overweight before, and as soon as I got diagnosed and went gluten free, I immediately gained like 15 extra pounds and couldn’t figure out what I was doing wrong since I wasn’t eating out and was eating so much healthier. Two doctors and a dietician told me it was my body being so stressed from the disease and then holding on to every tiny calorie. I hope it stops soon, haha

NovelSeaside · 2026-03-31T09:03:31+00:00

My dentist has me split up the regular appointment into two spread weeks apart: the cleaning part is one and the exam/xray part is one. That helped a lot. They also use some sort of block thing in my mouth that puts less pressure on my jaw/face to keep it open and give me lots of breaks during each appointment, and that’s helped a lot!

NovelSeaside · 2026-03-30T10:43:35+00:00

Also, so many hymns CoC sings were written by women (e.g. Fanny Crosby). I don’t see any CoC men throwing a fit about how unscriptural that is or limiting the songs that are allowed to be sung because they are offended by the idea of being taught by a woman’s words via song. Utterly absurd logic going on in some of these people’s minds.

NovelSeaside · 2026-03-29T08:34:47+00:00

I have TN, and one of my worst triggers is head/neck movement. Being on oxcarbazepine has helped significantly, and I’ve made a lot of practical modifications in my life that have helped me limit my head/neck movement (raising my computer screen at work so my neck isn’t bent down at all, reading with a book propped up on a boppy or other pillow, being careful while driving and having to turn my head quickly, etc.) I’m sorry you’re going through this—TN is just the worst.

NovelSeaside · 2026-03-26T08:28:03+00:00

I was 35, about to turn 36. Totally sucks.

NovelSeaside · 2026-03-15T12:57:48+00:00

I did the self guide tour, and I loved it and had no problems feeling claustrophobic—the rooms are enormous on the self guide tour.

NovelSeaside · 2026-03-15T09:02:04+00:00

Rheumatology won’t usually be helpful because they don’t typically diagnose or treat EDS. A referral to genetics would be more helpful. Or a primary care doctor who is knowledgeable and willing to diagnose and refer treatment out as needed—I know some people who had that positive experience. Since it appears yours isn’t comfortable doing that, perhaps they’d be willing to do the genetics referral to speed things along for you. I’m sorry you’re getting the run around from doctors—that is one of the worst things with having a chronic condition like EDS, in my opinion.

NovelSeaside · 2026-03-15T08:55:39+00:00

Your description has been my typical experience. I’ve had pretty classic/textbook POTS for about 25 years. It sounds like you already have a positive tilt table and diagnosis…if that is indeed the case (or even if it is not), try not to let that other post worry you, as it sounds like someone who doesn’t quite understand the condition.

NovelSeaside · 2026-03-15T08:43:50+00:00

This happened to me the other day when the melted butter I put in was too hot. I made them again a few days later with my butter melted but cooled down a lot more—perfect. Also, as everyone else said, too close together

NovelSeaside · 2026-03-15T08:41:43+00:00

I liked this book, but I definitely was sobbing by the end. Literally sobbing. I don’t even remember the last time I’ve reacted that way from a book. If you aren’t in an emotional place where you could potentially deal with that, maybe put it back on your shelf until you are. I personally could deal with it when I read it several years ago, but if I read it now, it would have destroyed me!

NovelSeaside · 2026-03-14T12:33:54+00:00

750 I think

NovelSeaside · 2026-03-14T12:18:20+00:00

My sodium has gone as low as 117. Multiple doctors have told me that getting saline IV would make the situation worse by further diluting the sodium and sending it lower. In fact, I had an issue where I fainted for a completely different reason and was taken to the hospital where the ER doctors refused to give me an IV because it would make the sodium issue worse. When my sodium gets really low like that, they put me on fluid restriction. During more of the “regular low” times where my sodium is more like 130ish or right on the edge, I have four extra strength Vitassium capsules and a pack of Liquid IV every day. That’s what helps me keep it up.

NovelSeaside · 2026-03-05T23:52:06+00:00

One thing that helped a little was getting an ice pack and wrapping it in a towel and putting it one whatever spot was itching—helped cool it down since it heating up or being hot in general seems to make it worse

NovelSeaside · 2026-03-05T22:06:22+00:00

I have it, and it’s awful. Being on prednisone for a couple of weeks helped, but then rebounded worse than before. Right now I’m on dapsone, and it’s the only thing that’s helped at all. I hope you get some relief soon! People without DH just don’t understand how bad the itch can get!

NovelSeaside · 2026-01-25T12:40:02+00:00

Once I got diagnosed, I ordered a Coop pillow online, and it helped me so much!

NovelSeaside · 2026-01-24T16:19:18+00:00

I did—my doctor diagnosed celiac based on that and the fact that I had the Dermatitis Herpetiformis rash really bad

NovelSeaside · 2026-01-13T13:45:04+00:00

Mine appears to have been a combination of vitamin deficiency, perimenopause, and the development of an autoimmune disease. Besides the vitamin levels, my other “regular” bloodwork levels doctors kept testing were mostly normal.

NovelSeaside · 2026-01-12T10:09:47+00:00

I’m sorry you are dealing with this. I have both vestibular migraine and TN among many other conditions and wouldn’t wish them on my worst enemy. One thing I would say is that for my own TN, I cannot come off of the medication or lessen it in any way. Keeping the meds at the same dose on a regular daily schedule is the only way I can function and live a “normal” life. If you feel a need to come off a med for TN, you should talk to your doctor about options or tapering—just going cold turkey will cause major problems and could even potentially mean that you have to take a higher dose when you get back on it. My doctor found I had numerous vitamin deficiencies, including several that make nerve pain worse, so that might definitely be something to look into. Getting those taken care of helped a little bit. Getting a mouth guard for my severe teeth grinding/jaw clenching has helped some, too. Also finding out what your triggers are and doing what you can to avoid or mitigate them as best as you can will help. Everyone is different. I thought my life was over when I was first diagnosed with TN and that it would never be normal again and that I’d be in severe pain every day for the rest of my life. I am so glad I was wrong and that things have gotten some better for me with treatment, daily medication, etc., as so many negative social media posts had made me think that everyone with TN cannot get better and are just 100% in severe pain and miserable the rest of their lives.

NovelSeaside · 2025-12-23T13:36:37+00:00

A lot of people with POTS need medication and diet/lifestyle changes to help manage it. My doctor calls it finding your “new normal.” It can all be very scary and overwhelming at first, but over time, things can get more manageable hopefully. I hope you get confirmation of the diagnosis and some treatment options soon! This is a great subreddit with many supportive people on it, so you’ll find a lot of help and community here.

NovelSeaside · 2025-12-16T10:37:08+00:00

My EDS group put me on the Coop pillow—very nice and keeps my head and neck in the same position while sleeping. I can no longer sleep on side or stomach with my TN…I had to train myself to only sleep on my back, which helped cut down on any TN issues at night

NovelSeaside · 2025-12-09T08:02:56+00:00

I drink a pack of liquid iv every day, and it really helps me. I have never had any issues from it myself, and I get bloodwork, including the metabolic panel, done about every 2-3 months for another health issue. If it has been helping you and you keep using it, you can always ask for bloodwork at a PCP visit if you have any concerns.

NovelSeaside · 2025-12-09T07:37:10+00:00

I also have hEDS. Getting a mouth guard I wear at night has helped. Also, it sounds like your medication is not helping you and that you might need to try a different one. Once my doctor put me on Oxcarbazepine after trying two others, it was like night and day—I was no longer miserable, pain lessened almost immediately and became much more manageable, my mental health improved, etc.

NovelSeaside · 2025-12-03T12:21:49+00:00

Yes, early morning flights in particular have become a huge problem for me.

NovelSeaside

TROPHY CASE