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MiamiLargo

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Hi,

Happy Fourth!  I am new to posting on this forum and am so appreciative of its existence!

I am trying to learn from anyone with info on the following:

1) Anyone who has worked with Dr. Abell (who published with with Dr. Fleisher before his passing) and has some treatment options including Gastric Electrical Stimulation?

2) Anyone who has approached CVS from the Autonomous Nervous System perspective using Beta Blockers?

3) Anyone who knows of the research of Dr. Yvette Tache in the CRF factor CVS: the Corticotrophin releasing-factor hypotheses, 1999) and if this research on the autonomous nervous system and CVS moved forward?  

Thanks!  My fiancé is an adult who has suffered severe CVS for almost 20 years, with the onset in the late teens (I don't know if this counts as adult or pediatric onset).  He has both the family migraine history and the mitochondrial malfunction and was diagnosed at age 18 or 19 (is now almost 40), I believe at the Mayo Clinic.

We are trying to get married and the illness is providing many obstacles for us!
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wynnak

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Reply with quote  #2 
First, congratulations!

The stress most definitely has an affect on CVS. We have seen people say they were either fine or their day was a struggle.

Is he currently or was he before the process of the wedding somewhat stabilized? Or has his episodes been s struggle since before?
Does he see a doctor that is CVS knowledgeable? Or mainly get treatment in the ER?

I ask so many questions because every little thing helps us know where he’s at and the treatsment and severity of his CVS.

At the conference we just had, we had one doctor talk about the ANS and how it relates to CVS. We also had a Nurse present that went over dysautonomia issues with CVS patients. So gauging where your fiancé is at and how he treats can help us make suggestions for you.

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MiamiLargo

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Reply with quote  #3 
Thank you for all of your questions and your congratulations!  

Re: stress - there is certainly a confluence of stress!:  his grandmother broke her hip and his mother moved back to Miami, where we live, about 18 months ago, which adds family demands. I had tremendous stress at work which was difficult for both of us; and Hurricane Irma caused a lot of damage to his family business.  So he's trying to care for us all, as well as his work.  On top of this is wedding excitement!  

While everything was calm, he and his team of doctors (internal, pain mgmt, psych) kept it all in check with the basic anxiety and pain meds.  Now that "life" has escalated, with so many close loved ones relying on his time, it is very difficult.  And he fears that unless something changes drastically, we'll be tied to his home hospital ER, minimal travel (we both love travel!), that I will have to have to be the primary income, which will make things even more difficult if we have kids (which can't really be pushed off too far given our age) and he hates the impacts of his illness on those he loves.   I have observed firsthand what I see as a lot of anticipatory PTSD that adults with CVS who have a history and memory of traumatic episodes hospitalizations can develop, almost exactly as Dr. Fleisher describes in one of his articles on treating adults with CVS.  He feels a morning sickness and an overwhelming flood of all of these fears take over.   

Re: doctors -  He was diagnosed at the Mayo clinic in the late 1990's and also saw Dr. Fleisher in Wisconsin back around that same decade. I have done a ton of research and while I think he has a good team locally, all of whom he trusts and who have cared for him for a long time now, none are schooled in CVS, particularly in adult CVS.  There was one doctor in the Miami area he sought out years ago and it was not a good fit.  We can't find anyone else.The basic balance of the home pain meds and anti-anxiety meds was okay for a young single guy with a family business, but isn't working sufficiently for someone almost 40 full of life and its demands.   The basics of mitochondrial support, anxiety meds, antidepressants, migraine meds are simply insufficient now.  We've also cut all wheat, inflammatory foods, and 90% of sugar.  Improved his head migraine frequency but not the belly ones. 

Additionally, his western doctors are specialists in a particular area: none are looking at his body as a whole so they are treating symptoms but not not addressing the underlying causes.   The psych dr. didn't want to discuss beta blockers, even last week, saying it was out of his purview; the internal medicine doctor put him on a med that was qualified mito-toxic last year, not seeing the whole body picture.  The pain mgmt doctor provides medicines which help but in so little a quantity (part of this is that they are controlled) that it can abort a few days of episodes but certainly not allow us to travel anywhere so we are locked to the home hospital ER.  A new pain mgmt doctor has started prescribing CBD but he is hesitant to take it as he doesn't want ERs to then decide he has CHS instead of CVS.   

I fully believe that the ANS could be the cause and perhaps best be helped by eastern or holistic medicine and we're starting to have him seen by a functional medicine doctor and may see an Ayurvedic practitioner and would love any feedback from success with this.  Acupuncture treatments do seem to be able to stop episodes - but we have to be near that acupuncturist and they have to happen to be open an able to take him at exactly the right moment.

I've followed the forum for a while but I'm writing now because with the episodes as frequent as they have been in the past 8 weeks - he is waking up sick almost every day and flirts with profound depression in his agony -  and this is making what should be this happiest time of our lives very hard for both of us.  And he is so physically and emotionally exhausted by the illness that on the days/afternoons he feels well, adding more doctors appointments and treatments is more depressing for him.  

This is why I seek some feedback on any recent adult advances or success stories.  We were thinking of flying to see Dr. Abell or Dr. Boles if possible.  Or returning to Mayo.  This is why I'm curious about people's experiences, particularly with any ANS treatments, the Gastric Electrical Stimulation device of Dr. Abell, or any follow up of the studies for the CRF factor.   Beta blockers  I saw written about successfully back on this forum in 2014 but have seen no subsequent posts (either people took them and recovered or this is no longer considered a good treatment option?).  And the elecotronic stimulation comes from someone who worked with Dr. Fleisher but these studies all seem to be from 2010 and I don't see anything new which appears odd.   

So sorry for such a long answer!  We are looking to find some new hope!  The literature is all positive that after CVS diagnosis, patients report an improved quality of life...but after almost 20 years of being from doctor to doctor, he is so discouraged that I am now trying to see if I can add some new energy into this - to try some new doctors, new options.  Thanks for anything you can add.   We'd go see the nurse or the doctor you mention tomorrow to have our full life partnership back!
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wynnak

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Reply with quote  #4 
My first though that is if he was diagnosed so long ago, that he needs a newer more up to date treatment plan. If you have a physician that is willing to learn, have them contact CVSA or sign up on the providers tab to have a consultation with one of the advisors.  

At the conference this past weekend, most of the treatment options were trip-tans and tricyclic anti- depressants. A good portion of the presentations were by doctors studying or reviewing things that you have mentioned. We even had functional medicine represented. 

I know this won't help you now, but CVSA and the medical advisors and peers have been working on the Adult guidelines soon to be released after it goes through the review process for the Rome Criteria and other such reviews before it can be published. 

Dr. Katja Kovacic has recently won a couple of awards for an Auricular Stimulator that she is currently trying. There really is a lot out there that is available and one more reason that I suggest the advisor consult for your physician.   

Things like: https://link.springer.com/article/10.1007%2Fs11938-016-0114-y

Dr. Levinthal presented an entire discussion on the ANS system and told us that it is all really in our heads ( since it is controlled by the brain).. he said it jokingly.. so please don't take it out of context. It was a reference to people saying that people make it up or its psychological etc. 

I have seen a few people try the gastric stimulation but they were very affected by other motility issues. 

If you look in PubMed publications, CVS is constantly mentioned. Be it for the confusion with CHS, or medications that have been tried. Betablockers did make a brief appearance and some do use them successfully, but the triptans and tricyclics are the prominent treatment. now. 

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MiamiLargo

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Reply with quote  #5 
Hi Blynda, 

Thank you!  We are going through everything you shared and these doctors really do seem cutting edge.  However, we feel quite stuck in two ways:

1) my finance's mother tried years ago to reach out to Dr Boles and was told he was only treating pediatric patients.  So age is a big obstacle in accessing many of these doctors.  The vagus nerve/aural studies would be terrific but it seems like they might not be available for years to those outside of the study...

2) We do not have a western doctor here in Miami who is willing to go outside of their normal practice to learn for us.  I don't know if the question hasn't been asked the right way but they really are quite concentrated into their specialties.  We are trying to build a relationship with an internal medicine doctor affiliated with the local hospital but he seems so busy it may not be the right lead.  We do have a certified functional medicine practitioner we believe could be a great resource to us.  

What is the best way for us to reach these people?  Should we just fly to Milwaukee?  Do we need to find a difference primary care physician before we go?  

Thanks again!
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wynnak

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Reply with quote  #6 
Age is hard. We had tried to get my Neurologist and hematologist to take my son as well due to familiarity with familiar history. But the definition of pediatric and adult is quite set. Doctors could lose their licenses for treating other than what they are licensed for. 

Dr. Boles treat up to age 25. So if he was over at that time, that would be an issues. I know that Dr. Boles practice has gone through several changes over the years that have also complicated being able to see him.

Have you gotten an update list from the office for doctors near you?I know that at one point we were so desperate that we called even the pediatric specialists and asked who t hey transitioned their peds patients too. SO if you haven't gotten a new list, I would suggest that first and ask for both so  you can inquire. 

If you do not have a physician that will work with you and try to consult with Dr. Venkatesan, then I would attempt to get to Milwaukee. I have heard wonderful things with people that have done this. But, it can be a process and limitations from insurance etc could be an issue. But it you call and get the ball rolling, that can help. There group that helps coordinate the out of state visits is very helpful. They could also direct you in regards to your PCP. 

But, I would also ask for a list of doctors and check the message board for the post the we have for doctor referrals to see if there is one mentioned there as well. 

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Blynda
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wynnak

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