You’re so welcome! I hope it’s helpful! Just bear in mind that I’m not a doctor and to think critically about anything you hear here. I’ve done my best, but all this info certainly can’t replace your own experience, research, and providers’ guidance.

In part, yes! But another factor for me is that in using the Cranometer app, I learned I tend to not get enough of certain nutrients, which may be causing deficiencies for me, leading to symptoms. So that’s also why I’m interested in supplements.

Thanks so much for sharing your experience! When you mention the business blog, do you mean that hypokalemic sensory overload was mentioned in the business blog? Just want to make sure I understand that correctly. It gets so complicated with diagnostic criteria for conditions. To me it seems like there is so much room for error, especially with lesser understood conditions. Doctors and patients have to manage the advantages of a diagnosis (hopefully to get the patient helpful treatment that improves quality of life), and also the potential disadvantages like misdiagnosis and misunderstanding with other healthcare providers the patient might see if their medical records include a misdiagnosis. It’s so hard.

@alightinthetent yes I believe the doctor who was researching it was called Micheal segal m.d this was a while ago and seemed to have gone cold.

@@philuin9594 Yes! In our periodic paralysis support group, there’s a medical journal article or two that’s circulated quite a bit. I think he was one of the primary authors. :-)

Ugh I’m sorry to hear it didn’t work for you. That sounds like a brutal taper down. If you don’t mind my asking, did you decide to come off of it due to side effects?

@alightinthetent yep,I missed one 8 hour window and I started coming down real bad,worse than any illegal drug I've ever taken.

Dang, yeah I missed a dose or two while I was on it, and it wasn’t pleasant. It sounded like a malfunctioning dvd player door was in my head and I’d get dizzy, but I know it can be so different for everyone. I hope things have been better for you!

@@alightinthetent yeah I'm fine now,that was 6 years ago. I'm not on any antidepressants now.

@@IDGAF56852 Glad to hear things are better for you!

That’s a really interesting thought! I have experienced weakness around my eyes, but never double vision, so maybe that’s why my eyes doctors have never suggested it? I’ll look into this. Thank you!

Hi! Yes, I am now off duloxetine and on several supplements. I’m planning a catch up video soon to share the details.

Thanks so much for the feedback! I hope it’s helpful, and I hope things are going well with your first week on it! There are a lot of horror stories out there. For me, the SNRI’s were probably the best meds so far in preventing migraine, and I’ve tried many. I did notice long term improvement in migraine prevention, but it also caused crazy night sweats and muscle jerks for me. My neuro advised the muscle jerks may be due to the fact that I have other neuromuscular issues that make me more susceptible to that kind of side effect. The night sweats unfortunately are a pretty common issue with the SNRI’s. I stopped duloxetine just over a month ago (32 days ago today to be exact). The night sweats have stopped, but I still do get the muscle jerks, so I’ll just have to see if those go over time for now. My neuro said SNRI’s can be especially helpful for hEDS patients that experience nerve pain due to the condition, so I think that’s partly why it may have been effective for me in terms of migraine pain and pain in general.

Thanks for sharing this resource! I’m in an FND support group and judging by how many folks leave the group because they were improperly diagnosed, I would agree that’s it’s often improperly assigned. The person I trust the most in FND understanding and education is Julie Hershberg who’s a Board Certified Neurologic Clinical Specialist and Physical Therapist. I’ve learned so much from her videos, much more than the doctor-recommended FND websites. (I’m also not being compensated in any way to promote her.)

Thanks so much for sharing. Gracious, you are going through it! I’m sorry you aren’t doing well. Have you been able to find anything that helps? Have you had genetic testing to rule out other forms of connective tissue disease? It’s so hard all of this hitting when we’re used to being active.

@@alightinthetentI did stem cells in Mexico 2 weeks ago, I’m doing HBOT currently, have been getting IVIG, also did a round of EBOO and will do peptides soon (hopefully). I may need to do B-Cell depleting medication soon, as it’s a risk I am likely going to have to take. My neurologist thinks it’s all autoimmune. I’ve had some VUS heterozygous items come back but no smoking gums. I tested positive for Lyme Disease at Mayo Clinic two years ago, actually. So there’s that to complicate things…a short course of antibiotics didn’t do the trick, unfortunately. It’s been a mess and I’m just really not doing well, my friend.

@@anson.meadows Wow, you’ve really been through the wringer! I thought I might have e Lyme when my health initially went south so drastically, but tested negative. When I was doing research on it, I was blown away by the ramifications. I so hope you feel better soon. It sounds like you have really taken action to improve things and that you have support. Sometimes I wish we had the technology of what I call body suits. Some kind of suit a patient could put on. It would replicate what’s wrong. Then a doctor could put it on and, without being harmed, understand what’s happening. Hang in there, and please keep us posted on how things go for you. We’re cheering you on!

It’s so frustrating. The neuromuscular specialist (an MD) I now see for Periodic Paralysis says she sees SO many patients diagnosed with FND. Even she is baffled by it. I ended up writing an appeal to my medical record to request the diagnosis be removed. The appeal doesn’t guarantee that they will make the requested changes, but if the provider denies the request, if you confirm that you want your request included in your medical records, they have to add it to your medical records. I’m grateful for at least that, so that at least if I end up in an ER, then hopefully it’ll give the doctor and nurses pause before assuming FND as the cause of symptoms.

It's called arrogance.

Thank you, Gianna!

Exactly! :D

I’m sorry to hear it’s causing you nausea, but so glad it’s been helpful for pain for you too!

@@alightinthetent better everyday

Hi Felicita! Ugh constipation is the worst! I used to get constipated for days at a time. For some reason, I seemed to become more constipated on Ubrelvy and Qulipta. With the venlafaxine and duloxetine, I seem to be much more regular.

Thank you so much for the sweet encouragement!

I’m sorry you’re experiencing migraines and chronic illness as well. It’s definitely not easy. Thank you for sharing!

Yeah, I still experience ptosis as you’ve mentioned. Usually in the mornings and evenings, especially when I’m tired, but also when I’m driving and when I get the attacks of muscle weakness. I’ve heard ptosis can be in so many things, including migraines, which I’ve already got a diagnosis for, but in light of the episodic muscle weakness I get sometimes at the same time or after, I often wonder if the ptosis could be connected with something else. I’m currently seeking out a second opinion about periodic paralysis and genetic testing for mitochondrial disease. I’ve had testing for myasthenia gravis which came back negative too. 🤷🏻‍♀️ Is the ptosis part of the unexplained issues you experience?

@@alightinthetent That's pretty much exactly my experience with ptosis, too. I also have fluctuating, more generalized weakness, but it's not in line with the periodic paralysis you've described. Yes, it is part of the unexplained issues! Hoping the second opinion and genetic testing bring you answers.

@@kaylacote5376 Thanks, Kayla! Such a mystery these bodies can be sometimes! I hope you are able to find helpful answers as well!

Thank you so much, Kayla! That means a lot to me, and honestly helps me feel less alone too. Thank you. If you ever have a specific topic in mind that you'd like to see on this channel, feel free to reach out with any suggestions. <3

@@alightinthetent Thank you, and I'm glad! I'd love to hear your thoughts on coping with medical professionals not taking you seriously, as you had mentioned something in your diagnosis journey video about a doctor dismissing you early on in your journey and that's something I think a lot of us with chronic illness face.