ShakeyTheOwl

Hi Alex I have had this happen a few times from this medicine. (HR in 40s is no fun) Am fairly new to taking it, started in May. Initially it was finding right dose. Am finding 45 twice day is tolerable. What helped me was knowing in advance to lower dose if HR <50, increase as tolerated. (written on script) And yes, thank goodness this medicine is short lived !!! Also have been tested for MG and negative.

*Papilledema

Hello And yes , have the dry eye too. Just had plugs put in two days ago. (Plus restasis, artificial tear and ointment) it is no fun and uncomfortable Also am being monitored for pelledema (sp?) Regarding the optic disc.

Delicious and perfect timing for sharing! Thank you!

Initially ordered variety of flavors. Now I order box monthly. Typically average four tablets a day. They are convenient. As SeattleChris pointed out there are online deals. Also, these were recommended by the Neuro. I've found salt loading challenging via natural source and or tablet (very hard on gut) Nuun has been tolerable since dx in February of this year.

This is wonderful!

Hi That would be challenge to order and find right size. Am wondering if any of the sport or athletic companies may be easier? Basketball ? CEP Type of sleeves or stockings?

Hi Steve! Badhbt is correct, regarding science and answers. (took me a few years to grasp that there may not always be answers) I too see Dr. Thyerlie, and will state she is incredible and very respected and missed from the UW. She specializes in autonomic nervous system, and I believe this is they type of neurologist you want to see, one that understands this complex system. The TTT at the UW is also one you should look into if you are wanting diagnosis or rule out Dysautonomia. I had mine in January at the UW, great tech and staff, but not an easy test if you have Dysautonomia... (went through two and half years of heck trying to get a diagnosis, it was very frustrating, and not uncommon with Dysautonomia and it's sub types. at onset of illness it was thought I had a lymphoma and underwent so much testing/biopsy regarding) Dr. Thyerlie is fantastic and hope you can consider to see her, if anything a consult? You mention going to Europe ... She is originally from Germany, educated and has trained there and in UK, additionally to here in USA. She brings a big background of experience and education. Which is something I highly respect. Regarding that flushing? Can't say which specialist is best, but do read about folks with Dysautonomia that get this from different reasons. I have Skin Marbling, which has to do with the blood vessels and blood pooling. (red spider web like patterns with purple/red and yellowish hue to legs, purple/black feet/ hands) This was diagnosed via Neurologist. Hang in there. You've come to a great forum with incredible information and amazing members!

Hi Just wanted to say your post is inspiring . Especially about effort to get out. Am sorry about your back issue, admire your strength. Not easy to deal with pain Hopng only the best from biopsy results too. Keep strong !!

Was just thinking, the saying "it's a curly one" Would definitely apply to dysautonomia ...

Hi! So sorry to hear lengthy process to diagnosis. Two and half years here, with a scare in beginning of possible lymphoma. Am glad you had good experience in Chicago, and hope something positive comes forth with your aviation cateer. The raynaud and blood pooling seems to be something a lot of us have . The sweat test for small fiber neuropathy, (qsart) also this neuropathy is type that many of us have too. Tons of incredible information here and awesome people. ((Btw- my fiance moved here from Auckland, NZ. Three years ago. Kiwis! Hope Chicago goes well for you))

Hi! it is not easy at times. I too have rough periods of not having enough physical or mental strength (brain fog) and am working daily on keeping strength, via recumbent bicycle, extra steps outside (walking) aggressive standing excercises, compression stockings, etc. Please know you are not alone, this comes with many emotions that sometimes feel more overwhelming than physical. (at least for me it does)

Awesome!

Hi Margiebee! yes, have had this similar trouble of blurry vision. Just went through very lengthy testing and appointments with opthomologist specialist, and now treating the "Dry Eye" syndrome which is common with some of the sub types of Dysautonomia. This "dry eye" can cause blurry vision. Am hoping by following this treatment plan that it can help. (drops, ointment & prescription drops) I hope you can find solution/answer to help, for it is a nuisance.

Happy Dance for the Katybug!

It seems there are many with gastric issues. And vitamin deficiency as well major allergies. As I was explaining to my fiance today, this is not a neat and tidy, fit in a box diagnosis. Am grateful for dine.org and this forum. It was recommended by the neurologist who diagnosed. I've learned a lot, and have been inspired by members.

*quickly approved (Three months from filling)

Wishing you ALL the best with SSD hearings. It can be challenging, and feel overwhelming. (Been there , and fortunate to be quickly) I look forward to reading positive results for you ALL!

Hi Wanted to share a few things that helped to comprehend when recently diagnosed. if you can look at information explaining autonomic - nervous system and all that it does - dysautonomia can be primary or secondary condition - there are different sub types - you are not alone, and amazing information here on dinet.org and members Oh, it's fairly common that this is a long process from onset to diagnosis. And because it is not very well known and considered rare, a challenge to communicate with medical professionals who are not aware. Hang in there, and hope something suggested helps. I was diagnosed in February of this year and we are still wrapping our minds to understand and educate ourselves. It is indeed overwhelming at first.

Relax, thanks for the giggle regarding analyzing This is a great post and replies and an area I very much hope to advocate with. (when I can get the brain fog managed) I use to joke about it being "battered patient syndrome", and have to say without a doubt the two years of being undiagnosed and sent to different specialist while my body was falling apart, was absolutely one of the most challenging to endure for self, family and friends. I wish there were better ways to nip this in the bud, so to say. That the medical profession seems so quick to toss it to mental illness, or state such, when it is not their speciality and ends up on patient record. If the patient is indeed needing mental health, then that should be supported and treated for that issue alone, and not as a catch all, or substitute for treating the autonomic nervous system. (this is where compartmentalized medicine may not serve patients to the best) Deconditioning, ugh.. that one got me too, (previous had been quite strong, and athletic. What helped was that the Neurologist stated that this is seen in athletes and apparently is more common) Alex, your comment about channeling resentment into positive. This is good and something am on board with. Would very much like to advocate as part of patient community. (although a bit challenged with brain fog) Will send you a message.

Brilliant! Thank you for sharing.

I encourage you to write and present the questions. Advocacy and awareness.

Hi! Had a two hour testing with opthamologist recently which revealed dry eye (can be common in OH and cause blurred vision) as well bundled nerve in left eye. It was referred to as papilledema, which am being monitored for. The dry eye was definitely something new to learn about. And am finding some relief via drops and ointment at night. The blurry vision waxes and wanes.

Seems strange to say that it is great to have a dx like this, but guessing your quest to find primary cause is closer?? I admire your strength to not give up Rich!! This also gets me to thinking about some things have seen Issie post in regards to auto immune at the core of a lot of this.

DiabeticGoneWild Thank you for the reminder on this L-DOPS. Had come across studies in Japan with it's success as well heard of folks in AU who did clinical trials state great results, one even mentioned she felt she went into complete remission during the trial. (she had OH) Last time I looked into clinical trials of L-DOPS in USA, they were all completed. (Doesn't Canada have this, but call it a different name?)