akj

Thank you bumpkin.  Appreciate the information.  Was this done during a physical therapy session, a chiropractic session, or with a primary care physician’s help?  Who does VNS?  Thank you, akj.

Has anyone found a cardiologist or neurologist in San Diego County area experienced in treating Dysautonomia/orthostatic intolerance?  The only physician listed in this area on the Dinet physician’s list has retired.  Would be most grateful for any information.

Thank you,

akj

I think this might be the article title.  Can’t get access to complete article.  But abstract looked interesting.  https://www.jacc.org/doi/full/10.1016/j.jacep.2023.10.015. AKJ

Was just reading about a 2023 study from the University of Oklahoma about some success with vagus nerve stimulation that produced some POTs symptom relief.  Emerging Role of Autonomic Modulation by Transcutaneous Vagus Nerve Stimulation: Electrifying Hope in POTS?^∗  Has anyone tried something like this and was it at all helpful? AKJ

Bailee

Don’t forget yourself as one of the most important support structures for your cousin.  Having someone to talk to that is experiencing the same condition is one great huge help.  Going it alone is so scary. akj

Yes that is a more realistic quote as to how we all feel.

 Thank you for the smile it brought.  
Hope you are having a positive day.akj

Thank you, Pistol.  My brain isn’t working and I forgot how you taught me to recreate the person’s icon in a response.  Will check back on our older posts and remind myself.

 We, my cardiologist, who has stick with me through all this, and I are definitely relooking at my medications.  BP and HR are staying pretty much in same pattern with systolic numbers dropping in 70’s on standing. But we will also review that as I have kept records .

But wanted to thank you for your thoughtful response.  Much to think about, changing symptoms, worsening symptoms, medications, and how to cope.  You give lots of support to so many. Thank you.  akj

Would very much appreciate input if this sounds typical.

I have had Dysautonomia symptoms for many years, though only got a diagnosis 9 years ago.  I have gotten used to compression socks, abdominal binder, 3 liters of water, 2 tablespoons of salt spread out through the day, Liquid IV, small meals, monitored careful rowing, and Midodrine,all the regular stuff we are supposed to do.

My usual symptoms have always been dizziness, lightheadedness , pre syncope, sometimes syncope, lack of focus, weakness, nausea, etc.  But just tried to manage with mornings being the worst.

In the last year I have had three sessions of loss of mobility where I can no longer stand and then bouts of vomiting.  As I mentioned in a previous thread, at first I was so scared I was having a stroke I ended up in the ER.  But after 2 trips and all tests coming back normal I started just trying to get through it.

Does this sound like just another cluster of symptoms experienced by people with Dysautonomia?  My cardiologist keeps telling me Dysautonomia symptoms aren’t lethal, but it sure feels awful.  And because the usual pattern has changed I wonder if something else is going on or is this another Dysautonomia symptomatic pattern?

Thank you in advance for sharing any input or your experiences.

akj

Sara

Thank you for posting this.  I truly thought I had gone through all the presentations of the 2022 conference and I always pay attention to anything Dr. Grubb presents.  But I did not see this one.  It is a great presentation ; succinct , with excellent summaries of treatments backed by studies.  Very timely for me as my cardiologist and I are ready to try different medications.

Have you been able to get the 2023 conference presentations?  I was able to see only six and wondered if access to the others would be available.

Thanks again for the investigative research that you do and for sharing.  We have had some excellent, well organized summaries about Dysautonomia concerns. akj

Very interesting and helpful.  Thank you for sharing.
Appreciate the summary and collation of information.
Sometimes you read so much trying to understand Dysautonomia conditions and treatments you become overwhelmed and forget all the connections or your brain fog makes rational thought difficult.  You did a great job.

Thank you.   akj 

Very impressive and well done.  Thank you for sharing.

Appreciated reading your daily schedule, good ideas, and most helpful.

akj

Sarah Tee, yes first and foremost, as Pistol so kindly reminded me, congratulations on your return to a more normal brain blood flow.  I didn’t mean to be rude and to forget to mention that.  I just got excited and thrilled that there might be an answer to improving brain blood flow.  Best wishes for continued improvement.  akj

Sarah, did I miss a conversation thread.  What caused the blood flow to your brain to return to a normal level?

akj

My diagnosis in 2019, about ear sounds, was pulsatile tinnitus in R ear.  The sound I hear is my heart beat.  It is constant.  

But I can’t say if it is from POTs as my Dysautonomia diagnosis seems to keep changing.  ER doctor said I had vasovagal syncope, neurologist said POTs, cardiologist labeled symptoms orthostatic intolerance, another said neurogenic cardiac syncope.  Neurogenic  orthostatic hypotension was also suggested??

I was surprised to get such a clear diagnosis of my ear problem, when a set diagnosis of my Dysautonomia has not happened.  Midodrine has helped me keep my BP and HR more stable.

But to answer the question you asked, VerdantPikmini, while I can’t be sure they are related, I certainly believe they are.  They both, pulsatile tinnitus and Dysautonomia problems, seem related to circulation issues of some kind.

As always thanks to all who contribute and support this site. It is a lifesaver for those of us who keep searching for what on earth is wrong with us.

 Thank you, akj

The three times I have been to the ER, Hypokalemia and other electrolyte imbalance were noted.  One precursor to this seems to be I stop having very low blood pressure and get into hypertension with blood pressure reading very high particularly diastolic.  And I feel just awful.

Thank you @Jyoti for the low sodium V8 juice suggestion.  Have read tangerine juice is high in potassium.  Since we have a few trees of this fruit I also try that.  My cardiologist is not ready to try potassium tablets as he is not sure what sets off this electrolyte imbalance.

I really don’t want to go to the ER, but the IV infusion helps almost immediately.

Wish I was a better searcher of Dinet topics as every time I feel lost in some new symptom I cannot explain or understand I find help here.  Thank you all.

Thank you all for essential information that I really needed.  Unfortunately brought home from ER visit an unwanted respiratory virus.  Was not feeling at all well but I had no hints as to what would be safe OTC medications for chest congestion for someone with Dysautonomia.  Thank you, as always my lifeline.

@Sarah Tee

Wanted to send a more detailed thank you for your suggestions and article links.  I have been in bed feeling pretty awful having caught a respiratory virus at the hospital.  Haven’t read much on this but do think having Dysautonomia makes recover from other viruses harder.

Wish I did have a specialist’s input.  The one I was referred to in our area for TTT has since retired.

Have followed your posts with interest as your profile listing of symptoms and diagnoses sounds so much like mine.

Will review article suggestions carefully.  Thanks again.  Much appreciated.

Looking forward to info from this July’s conference.

akj

@Sarah Tee thank you

akj

@Pistol Ok, that was fun to learn something. Thanks 

Thank you Pistol ( how do I create the little turquoise oval the opens a response?).  Appreciate your insights.  I always explain when ending up in ER that I don’t experience vertigo, but lightheadedness and in these new episodes syncope.  So very helpful to know Meclizine is more for vertigo.  I’ll stick with Midodrine.

The other prescription was venlafaxine er.  Not sure that is going to help, taken it for three days and find I can’t sleep.  So I have not yet got a workable prescription plan.   Glad that you have something in place that supports you.  But I am sure it took a great deal of work and trials.

I have been reading more and more about IV infusion therapy and how much it helps some Dysautonomia individuals.  I have thought about it, as I am sure you know, once you are taken to the ER a drip is almost always started first thing and I think it makes me feel better.  Thank you for your thoughts.  AKJ

Have been doing pretty well with Midodrine for controlling lightheadedness and dizziness.  Had a sudden syncope event that brought me to the floor followed with intense vomiting.  Was transported to ER and doctor there prescribed Meclizine. Which gave some relief.  But follow up with my neurologist brought another suggestion for change, Effexor?..
 

A few searches suggested Midodrine and Meclizine don’t work well together. And checking some threads on Dinet showed a number of people wary of Effexor.  Does anyone use these drugs regularly and if so how taken?  What time, together, separate?

My thanks.  Dinet has been my life line through this very confusing condition.  Found a thread from 2018 “ER and full syncope.” Which was so helpful.  I thought I was near death with some new aspect of OÍ.  But there was info right there that others had had this very same thing happen.  Reassuring that you aren’t alone.

And very special thanks to the moderators and contributors who do so much study and research.  It is very very helpful.  You amaze me that you can put together such excellent papers and dialogues with the brain fog so many of us experience. Thank you, akj

Thank you Pistol for taking the time to answer so completely.  I thought the book was very very helpful.  I learned a great deal, applauded the”flip the clinic concept,” and saw myself in so many of the shared situations.  It was well worth buying and reading.  That book and Dr. Yellman’s lecture on managing Orthostatic Intolerance presented by the Bateman/ Horne institute in conjunction with U of Utah gave me hope.  I began to have symptoms in 1992 but was not diagnosed till 2009 and it is amazing the research, the articles, the lectures, etc.that now come up.  Of course as the Dysautonomia Project book says the help provided by those who share information, as in this site, is an outstanding .

Thank you MikeO and Sarah.  My cardiologist, who diagnosed my orthostatic intolerance, has suggested trying pyridostigmine / Mestinon.   Midodrine, water, electrolyte solutions, compression garments have been my treatment regime.  In another blog I mentioned I had a reaction to my3rd COVID booster, omicron bivalente and was hospitalized.  Before this incident I thought I was managing my symptoms pretty well.  But after almost six weeks I have not got back to “normal.”  Dizziness, elevated HR on standing, nausea, etc.  So as we all do I had been searching for info on this drug, as I would really like some improvement.  Appreciated  what you have shared. Thank you.

Thank you Pistol.  Have order the book.  Though wish publication date was not 2015, so much is happening so fast.  So also got downloadable health provider 2022 copy.  As always thank you to this wonderful community that shares so much knowledge.

Well I apologize.  Found the perfect information pamphlet  right on the Dinet site under Physicians.

Thank you.