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ginny

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Reply with quote  #16 

Paul, Blynda is sending you some info privately.  Her son is on some more unusual meds and maybe that could help Beth.  

Compazine never helped my daughter.   Phenerghan (I think that is the Promethazine?) did not help us either.  Is it off the market?  In the antihistamine family of meds, Atarax was helpful by IV.  Everyone is different.  The various antihistamines effect different parts of the brain-- this would be why what works for one person does nothing for another.  

I am not sure that Zofran helped us either.  I am hearing that some of the meds that were meant to be used during a cycle but being prescribed for daily use are actually aggravating side effects.  We never faced coalescence and I know Beth is very very ill.  

For us, during a cycle, Thorazine helped with sedation.  Anti emetics were used IV.  Other meds were mixed in such as Ativan and antacids meds. Sedation seemed to be the one most helpful thing. 

For the CVS adults, so many have very slow gastric emptying when they are ill or coalescing and the meds often compound this aspect.

Any chance Beth can be admitted and sedated to break the coalescence?  One of the former message board members, Kate Connor, was admitted to ICU where she was sedated.  She was on loads of meds and combos of meds.  From what I can tell through Facebook, she is once again well.  
SmokeEater (Bob Trophy) was very ill.  His state approved medicinal Cannabis and using the Cannabis Oil, he got much better.  (I hope he is still doing better.)

Propanol has helped some adults. If that is not an option and if Elavil was not helpful, sometimes Nortriptyline is helpful.

Beth might benefit from inpatient care to a quiet area where she can be sedated and then hopefully start to be well. 

Please let us know how she is doing.  I think about her often.


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wynnak

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Reply with quote  #17 
It is going to be similar to using the Lorazepam. Anxiety, Nausea combo. The benedryl combats the side effects. Have they been doing anything about the lack of nutrition? I am a big on this.. TPN, feeding tube.. anything like that? The pain of not having anything for your body to process is almost as bad or worse than the abdominal migraines.. Or so my son says. It can make your body sicker. 
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wynnak

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Reply with quote  #18 
Hey Paul,

How are things going? 

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Blynda
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jmeveringham

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Reply with quote  #19 
Thorazine was very helpful,because it is a painkiller and sedative. After going to many doctors,I began to realize they would pretend to follow the empiric guidelines, but actually left off any narcotics because they were afraid they would be lethal, and they were protecting their medical license. Quite common practice.Read your bill from the hospital,if you get that.We get to see that we paid $40 for an aspirin,and every thing else.Make sure you know what she's getting.Just from your post,I am concerned that she is getting only antihistamines and antianxiety,antinausea-but no anti pain?That is essential ! Thorazine, Dilaudid,etc. All the rest were very helpful once the pain was dealt with.Read Dr.Fleishers 41 Adults paper on the website. I would seek a Neurologist,if I have to look again.There have been a lot of medical publications about CVS,and Neuros are realizing it's in their field. They like complicated things that involve the brain, they read,and they have no problem with stopping pain because they know all the drugs,very well. I am currently responding well to *mg Injectible Sumatriptan,injected right into my diaphragm.Two self injections,one hour apart.Plus Amitriptyline and Supplements. I am 68,had this since birth,and self diagnosed about 12 years ago,with the help of this message board.Only now have I found an interested,and competent MD. jessica
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wynnak

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Reply with quote  #20 
Jessica, Thank you for posting about info for Paul.. I'm glad you have found something that is working for you. A supportive doctor goes a LONG way [smile].

Paul, I do not know if you have seen or know of this.. http://www.ucalgary.ca/motility/motilityclinic I was talking to a Mom last night about it. They do list CVS on their website. I know you have tried a lot.. But she was unaware of it. So I thought I would mention it here as well. 

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MiamiLargo

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Reply with quote  #21 
Hi Paul,

I am writing more than a year after your last post. My fiancĂ© has had CVS with adult onset since he was about 18 (now about 40) and is coalescing.  It is terrible; he's been unable to work or function for about 5 weeks now straight; before that he had only a very few good days this spring.

We are looking into Dr. V and the five other national adult specialists listed on the CVS site.  A local pain management doctor told him this week that he couldn't expect better than what he currently was experiencing.  This is the best they can do. Which is horrible.  

We want to learn about the gastro stimulation and the vagus nerve stimulation.  I don't know why these things aren't posted about here, nor why there are so few posts about the five adult doctors mentioned.  Anyhow, I would be so appreciative to learn if you tried the injectable sumatriptan that Jessica mentioned or any other non-standard treatment.  He has tried everything that is considered standard.

Thank you!
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wynnak

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Reply with quote  #22 
Dr V will have access to the auricular stimulator that is the newest technology that is being tried on patients for the vagus nerve stimulation. Dr Katja Kovacic is trialing them now at CHW in Milwaukee. Her and Dr V work closely together.
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paulgifford

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Reply with quote  #23 

MiamiLargo - I would interested in hearing more about this and what the options are regarding Dr Katja Kovacic .  Since we are in Canada, it's a bigger struggle to get coverage and local help.  We say Dr.V years ago and were never able to take any lessons learned back to help Beth longer term.  We are pretty much done with a lot of the drugs like Thorazine, Compazine, Amitriptyline, Dilaudid, Nortriptyline, Sumatriptan, etc. They have all caused major emotional, and harmful side effect.  We had to stop the Emend Kits due to severe hallucinations

wynnak - I have given up on Dr.Curley as his bedside manner is beyond inappropriate and doesn't appear to give a damn. We have an appointment with Dr.Andrews but we are very hesitant. CVS is not something that they really like to even say out-loud and refer to it as a motility issue.  They would read the empiric guidelines if they were paid to. 

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ginny

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Reply with quote  #24 

Paul, I am so sorry that Beth is having such an awful time. I have admired her determination and her courage.  I have prayed for her and will again include her in my prayers.

As to actual helping her, I don't know if you have reached out to the UK CVSA organization?  And if maybe something that Fiona McRonald PhD tried might help Beth?  The paper she wrote with Dr. Fleisher was powerful.  You have probably reviewed this and everything else.

Testing is still going on with the continued cycles?  Addisons has been a late diagnosis, appendicitis a late finding, kidney disorders, and more that I cannot come up with right now.  


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ginny CVSA Moderator
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MiamiLargo

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Reply with quote  #25 
Hi Paul,  

We are signed up for a phone consult with Dr. V next week and have reached out to Dr. Levinthal in Pittsburg about setting an appointment.  It's taken these weeks to get the phone call lined up and the inches and inches thick of medical records together for Pittsburgh.  Since last writing we've been back to the hospital which refused to sedate him, gave him benadryl and zofran and antacids and reglan and sent us home - ignoring 10 years of sedation treatments in that very hospital and started researching anew, finding the pediatric guidelines and sending us a PDF with what to do for a stomach ache.  They didn't even turn the room lights out.  It was a mess.  So we are hopeful for the phone call with Dr. V and the adult guidelines and anything we learn we will share.

For what it's worth, we know anxiety/maybe even ptsd about the episodes and consequences of them are triggers - and often are for adults, as also observed by Fleisher.   We're trying to approach this through this angle as well.    Does Beth have lots of anxiety?  

Also, we realized that the insurance company covers many of the CVS meds under their migraine protocol, so we think it may help in getting some of the migraine meds covered - but that are averaged on 4 migraines a month, not daily!  

Working with our doctor, we did try a very low dose of a beta blocker and it did seem to calm the system temporarily.  Since dosages aren't mentioned here, I don't think it was near the dosages that would be recommended  based on my online research but that's something we hope to learn from Dr V next week.  We also are hoping to learn of some of the anti-seizure meds that are used for both migraines and CVS from Dr. V... I hope we get some leads to try and we will certainly share them. His doctor here is also trying him on an experimental migraine med.  

Re: the auricular stimulation, Dr. V's office wrote us that we can't participate or have access to that study.  I did talk to an acupuncturist about it.  It seems they all have the electro stimulation devices but would prefer to needle when not dealing with kids and that needling more directly on the body would be more powerful for adults.  That said, it's not possible to just needle anywhere at any time, so we may test the machine that exists ourselves.  We are lucky to have access to good acupuncture, so are exploring this route.

I have not been able to learn anything about Dr. Abell or the gastro electrical stimulation on this site.  It seems that would be a mechanized version of the reglan?  But why no one has been to see him when he's listed as a national expert is very strange to me.  When I called his office, the receptionist/assistant said they had CVS patients "all the time".  This would be great if it meant it worked so successfully no one ever posted on this forum, but it was all a bit mysterious.  

Anything we learn we will share.  Please do the same!
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MiamiLargo

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Reply with quote  #26 
Hi Ginny,

You wrote in your message to Paul:   "I am hearing that some of the meds that were meant to be used during a cycle but being prescribed for daily use are actually aggravating side effects."  

Is this due to the slowed gastric 
emptying?  Do you know which meds these were?

Thank you!
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ginny

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Reply with quote  #27 
Most of the meds used in CVS treatment due have constipation as a side effect.  Dr. Flesiher would get his patients off medication and start fresh.  He had an inpatient program so he could monitor the patients.

I am not a medical expert, just a volunteer so please check with your doctor. 


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ginny CVSA Moderator
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MiamiLargo

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Reply with quote  #28 
Oh yes, we do address that complication!   Thanks! 
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