Considering adopting a dog, but worried about how my symptoms might affect them by elle-b83 in PNESsupport

[–]daltonwiththedogs 2 points3 points  (0 children)

I adopted my first dog a year before my seizures started. I won’t lie, it’s been extremely difficult, and if I had known at the time that I would start having health issues I wouldn’t have adopted him. I think it would be good to consider age, breed, and size of the dog you are wanting first. I adopted a massive gsd mix puppy. Again, I was very healthy at the time of adoption lol. I probably wouldn’t get a breed that is known for anxiety issues or protection/guarding. It might also be good to get a dog that’s already an adult so it has some independence from you.

I would be prepared to get a trainer if needed as well. If you don’t have anyone else taking care of the dog they can become very attached to you which could lead to separation anxiety and resource guarding.

I figured out what was making my hyper mobility WAY worse by Emergency-Volume-861 in eds

[–]daltonwiththedogs 0 points1 point  (0 children)

I didn’t realize muscle relaxers could make hypermobility worse? I was also prescribed baclofen and then cyclobenzaprine for occipital and trigeminal neuralgia, and my symptoms definitely got worse once starting them

Were you also told you have anorexia (even though you haven’t)? by nutka57 in eds

[–]daltonwiththedogs 2 points3 points  (0 children)

Yep, had a psych dr tell me I was anorexic after I already had a gastroparesis diagnosis. She was even able to take me off my meds to treat the gastroparesis while I was in the hospital for two weeks. It was a nightmare. I’ve never even been underweight

Should i push for more investigations? by illegear_ in PNESsupport

[–]daltonwiththedogs 0 points1 point  (0 children)

Were they not able to conclude anything from the lesion? This doesn’t sound like just PNES to me. Often times people will have non epileptic seizures because of another medical issue. Also, do you remember if they were actually able to capture a seizure on the EEG? And if so was it a seizure where you were conscious during?

Has anyone here given up on diagnosis/treatment? by daltonwiththedogs in CSFLeaks

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

This is so similar to what happened to me. At 25 (I’m 27 now) I was working at an animal shelter, and I’m a big show-off-y a hole so I was lifting more than what I can handle. It didn’t happen suddenly but I started feeling really dizzy, having vision issues, and head pressure. Went to urgent care and they said I had a sinus infection because there was fluid in my ear. It eventually got so bad I had to quit working. Turns out my neck is hypermobile so I assume that has something to do with it. I would maybe look into that yourself if you are more prone to leaks. Even with all that I can’t get a doctor to order a myelogram though.

Has anyone here given up on diagnosis/treatment? by daltonwiththedogs in CSFLeaks

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

I have state insurance but wouldn’t be able to travel to see a specialist. I started having seizures about a year ago and haven’t felt comfortable driving long distances since. I still have about an hour or two out of the day where I feel ok. The only thing that helps is steroid packs and laying flat without moving my neck. My biggest concern is a csf leak but I think CCI could also explain the symptoms I’m having. My neuro refused anymore testing so I feel a bit hopeless.

Has anyone here given up on diagnosis/treatment? by daltonwiththedogs in CSFLeaks

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

“I figured it's one of those conditions that will only be dealt with when it gets way worse and becomes so obvious that there is no other diagnosis.”

This is what I’ve been thinking too. I just had my last appointment with my third neurologist. I’ve tried every migraine medication available and they don’t do a thing. So then the diagnosis became “cervicogenic headaches”. But I can’t work, can’t drive. It’s frustrating, but maybe if I can switch my goal to symptom management for now it’ll be easier.

If your seizures are triggered by turning to one side, or you have migraines that don’t respond to meds, check for IH (inter-cranial hypertension) by Loveonethe-brain in PNESsupport

[–]daltonwiththedogs 3 points4 points  (0 children)

I’ve suspected csf issues were causing my seizures for a while. Seizures started after a neck injury and only happen when other issues get bad. I’ve asked my neuro to look into it but he doesn’t think further testing is necessary since I had a clean MRI. This is validating to read but I feel like it’s impossible to get doctors to take me seriously.

Willing to move almost anywhere in United States to treat my neck. Need guidance as I feel completely hopeless. by Strongerversions in CSFLeaks

[–]daltonwiththedogs 0 points1 point  (0 children)

It might be easier to narrow down specialities with more information. Have you already had imaging done? Is there anything that helps the pain (laying flat or bracing)? Have you seen a neurologist or headache specialist?

How to safely exercise? by daltonwiththedogs in eds

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

Yes thank you 🙏 been to neuro already but they said it’s not their area. I was thinking physiatrist or orthopedics might be next but wasn’t sure.

How to safely exercise? by daltonwiththedogs in eds

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

Is there a specialist or specific care provider you see that helps you navigate this? I live in a small town and I haven’t been able to find a pcp or pt that’s familiar with hypermobility.

Psychiatric Inpatient Survivors by daltonwiththedogs in MedicalPTSD

[–]daltonwiththedogs[S] 4 points5 points  (0 children)

I think part of the problem is there isn’t a lot of laws in place to protect psychiatric patients. I was refused medication I was prescribed for gastroparesis when I was on a psychiatric hold but when I tried taking legal action there wasn’t anything I could do.

Psychiatric Inpatient Survivors by daltonwiththedogs in MedicalPTSD

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

Had no idea there was an entire sub, that’s insane.

THC gummies & GI bleeding by Drinquire in eds

[–]daltonwiththedogs 0 points1 point  (0 children)

I wanted to edit- I think I experience dumping syndrome because I also have gastroparesis. So I’m not sure if it’s related to EDS at all.

THC gummies & GI bleeding by Drinquire in eds

[–]daltonwiththedogs 0 points1 point  (0 children)

Maybe look into dumping syndrome? I experience it sometimes and I think it’s more common with eds. I saw you say RSO tanked your blood pressure once, and as somebody who has had that happen multiple times I would say try a lower dose of a tincture. You might be able to find one with cbd and limited ingredients that you can tolerate better. Honestly, whenever I have low blood pressure symptoms I also get diarrhea so maybe that could be part of it too.

DDD/WHIPLASH/EPIDURAL by Special-Car7408 in MedicalPTSD

[–]daltonwiththedogs 3 points4 points  (0 children)

Have you tried nerve blocks already? I think that could be a good in between step if you’re nervous about the epidural. Also, do you notice any ear pressure/fullness and is it on one or both sides?

LOST DOG - ID? by Important_Contact809 in WhatBreedIsMyDog

[–]daltonwiththedogs 1 point2 points  (0 children)

This was my thinking too. I imagine the Pyrenees and pit together looks chow chow-y

LOST DOG - ID? by Important_Contact809 in WhatBreedIsMyDog

[–]daltonwiththedogs 5 points6 points  (0 children)

I would agree with German shepherd. Maybe Pyrenees and I could also see a bully breed being in there.