Terri

I would advise you to join one of the many LDN facebook pages for help when first starting LDN. For many it goes very smoothly, but there is a small amount of people that will have some side effects to deal with when first starting. For example, vivid dreams and maybe some sleep issues the first few weeks. These groups have a wealth of experience along with good advice on how to manage. Good luck with both of these drugs. And kudos to your new doctor thats thinking outside of the box. He/she sounds like a keeper!

Gaining the right diagnosis is so important. Awesome that you finally received yours! You mentioned cutting out dairy - gluten free has proven to help many (not everyone unfortunately) with autoimmune. And have you looked into LDN? There’s a facebook page called GOT ENDORPHINES LDN that might help you with information about this drug. Again, helps many with autoimmune but not everyone.

If you read Dr. Afrin’s (a leader in evaluating and treating MCAS) book on mast cell issues he prescribes klonopin for many of his patients. Supposedly it works better than other Benzoes for this issues, although obviously other types have helped people as you can see by the responses. I would encourage you to read his book (can find on amazon).

Bombsh3ll - that is what I was thinking. Josh I hope you can find someone to do testing for a phaeochromocytoma soon. Also, have you been evaluated for chiari and/or intracranial hypertension?

CK1 - are your bowels over stimulated or are you constipated? Have you had an EKG? Have you worn a heart monitor for a period of time? Do you have any other symptoms that would suggest an autoimmune disease, EDS, or any other condition? Are you using any supplements that would interfere with any of this? It really seems like you need someone to intervene on your behalf from your medical community. This has been going on way too long. I am so sorry what you’re going thru. But stay hopeful. You’re young and will get this figured out. Please keep us updated on how you’re doing. Take care.

I assume they’ve checked your thyroid. Also, I wonder if they’v checked you for autoimmune issues such as lupus, sjrogrens etc. I agree with KiminOrlando, you should get to Vanderbilt if you are able. I am so sorry with all you’re going thru. It is very scary at times. Glad you found this site.

MomtoGuiliana, What SSRI did you start that helped your symptoms if you dont mind sharing?

P8d, how are you being treated for your hyperadregenic pots if you dont mind sharing?

Really interesting theory about EDS/MCAS/POTS from a doctor that is living it. Anybody know anything about it? https://www.rccxandillness.com/

That is so true bombsh3ll. I had a friend that was at the doctors every other week with some obscure illness she thought she had from googling her symptoms. I was an extremely fit runner, maybe went to the doctors 4 or 5 times for something other than OBGYN checkups in 20 years. Luckily was with the same GP for all that time so he new something was very wrong. Just didn’t know what. I got my diagnosis’s for the dysautonomia faster than some because mine was from a neck/back of head injury so it came on fast and furious. Unfortunately I just keep getting one problem after another and I know there’s more to it but I cant get a neurologist that wants to dig deeper. Blah...it stinks...and I’m tired of trying. I feel like until you blow a blood vessel and have a traumatic event they just dont care.

You are so right Kim....same with people in general, not just doctors. They dont get it unless they have a good friend or family member struggling with a chronic issue. And in all honesty before this all hit I wouldn’t of gotten it either. If you dont have cancer or heart disease you’re not in the forefront of what people consider “health problems”. I was on a cardiac floor for 3 days last summer and many of the medica staff mentioned I’m the healthiest sick person on the floor. Perfect labs etc.

Thank you for all the above information. I have yet to find any neurologist interested enough to dig into my situation. Confirmed TTT but someone needs to get that its got something to do with my arteries just like you. I can feel when they ignite and then an episode comes on. Around here as long as the mri/mra and cat scan are ok they look no further. I need to find a private neurologist I guess? I emailed you thru the message board in hopes that you’ll share your neurologists name. We would travel to get a good one. Thanks again for sharing your journey.

This is so interesting. Do you actually feel the spasms? What are the triggers for you? When you say bad attacks do you mean hr/bp issues? What medication do you take to stop the attacks? What other tests did they offer to see the brain damaged area? Did you or do you have a lot of head pressure? Who is your neurologist? Sorry for all of the questions but your story is so compelling to what I’m experiencing. Thanks for sharing.....

Looneymom, are you and your son still taking LDN? Trying to get input from a few here on this site. I’d like to take it for pain as you are (were) doing, but I’m not sure how it would effect my autonomic issues. What type of doctor gave you a prescription? Thanks for any input you can provide. Terriann

Would you mind sharing your physiatrist name? I assume he is a doctor since he prescribed. I have many of the same problems you have or had I should say. I’ve been following a group of fibro healthboards and many talk about LDN but I wanted to see if there was any one on this board that had the autonomic issues too that tried it. I notice you’re from Ohio. Me too. Akron area.

I know this is an old post but I was searching for LDN information and this sequence of posts came up. I hope you are doing well now songcanary since your last post. I saw that you mentioned you stopped LDN in your very first post of this string. Can you tell me your experiences with this med. Why you started it? Why you stopped it? What kind of doc prescribed it for you? Thank so much for any input. Terriann

Wow Lily! Your so productive and have great techniques to help you thru the day. Sea-poet, I too am home bound and unable to leave my home for any length of time. I started to write down my day today after seeing your post and sadly it did depress me too. What you have to remember is none of us are the same. We all have limitations - some more than others. I hope your OT can help you explore furthering your productivity during the day. But try not to be too hard on yourself. Take care. Terriann

That’s an interesting thought WinterSown. I wonder if oxygen therapy would help Dysautonomia symptoms?

Awesome wintersown!

Thank you. You are a wealth information! Perhaps you should open your own website!

You amaze me looneymom. Your dedication is endless. I don't post much here but I've tuned into your son's progression and am cheering him on here in Akron, Ohio!. Do you have to get particular 23 and me testing to get all that info? How does this work? Do they interpret for you?