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Debbieh

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Reply with quote  #1 
Hi I am Debbie. I just turned sixty. I lived a good life until July 1995. I worked in a home for the mentally and physically challenged. I was changing a two hundred pound man after a seizure. He thought he was falling and came down hard on my back. I heard what sounded to me like a pop and a gush noise. The migraine instantly began. Our workers insurance WCB recognize the back injury just not everything it brought on. They blamed my migraines, abdominal migraines and abdominal migraines with CVS on an old accident. . I don’t follow normal diagnoses they just all happen. And none of these things do any of my family experience. My CVS happens at any point in a migraine. The pain in my head switches to my stomach. The abdominal starts and immediately with it is CVS. The duration is always 14 hours, over and over barely can I catch my breath. Then it shuts off and depending on where it happened in the migraine, it either ends this way, or the pain crawls back in my head allowing the migraine to carry on until it’s finished. After the first couple of years of no one believing me. I got a distaste for Doctors. I wasn’t able to share with people and when I did they did not understand. I live in amongst eight teen acres of bush. Mostly for the worst of the years I lived a lone. Was unable to have children. My husbands job took him away. When he was home I tried to hide this and he quite willingly let me. I have recently found out people I knew have had migrInes. And everyone hides it. It’s our shame. The damage for me was caused by dehydration. I was in no shape to drive myself. My husband didn’t understand when he was home. Believing this was an injury to my back I sought chiropractors all these years. They had egos so big. All were going to fix me. They couldn’t. So these last two years I have been on a journey of how not to just survive this but to live when I can. I empathize with all of you. I saw a few posts of folks like me, just triying to live through something so horrible without a diagnoses. Kudos to you warriors!! Four years into this I went into full blown menopause. Forty three years old. My thyroid has been destroyed and I was depleted of female hormones. My adrenal gland has been under attack so many times. It’s as though I live in a fight and flight reality . I have a huge problem with sound of any kind most hours of most days. My skin is messed up only as repeated severe dehydration can do. I had my bowels checked, mine no longer work. Again dehydration. Years and episodes of.dehydrating. And I was in excellent shape. With all this vomiting that went on I had my stomach checked. Apparently rock hard from all the exercise it has been given. I had problems with my stomach lineing because of the CVS but my stomach is fine. I got a CT scan in July. I have severe shrinkage of my frontal lobe and dead brain cells. Essentially this got to steal who I once was. I use cannibus, Advil and a needle that aborts it when I get the abdominal with CVS. Taro-sumatriptan. All of this has been a game changer for all the years I suffered without support or anything to take. Sorry for the length but what a crazy 23 years this has been.
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ginny

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Reply with quote  #2 
Hi Debbie, What a terrible and life defining injury you suffered.  That pop & gush you heard and the instant headache do seem to be the initiation of your decline in health. I am sorry no one paid proper attention to the injury.

You have had a rough road. I admire your tenacity.  Is there a medical center that would be able to offer a total fine combing of your medical problems?  So much of what you are going through sounds endocrine related, are your doctors offering thyroid  replacement, hormone assistance or help with getting your bowels to move? I am really sorry you have no support system.  



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Debbieh

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Reply with quote  #3 
Hi Ginny. Thank you for your kind words. I have been on hormone replacement and thyroid since 2010. All this goings on has made it hard for me to be regulated properly. I went to my doctor in 2015. She sent me to a Spine and Neck clinic. The whiplash they say could not have caused this. My Doctor also sent me to a Neurologist but after 21 years I was in denial. Migraines happened in families. None in mine. Lots of denial. This Neurologist also suffers migraines, severe debilitating one’s and she also gets nauseous and vomits. She believed I was like her, I still didn’t understand I was not able to explain my self well enough. tried to see her again and I had been dismissed to my family doctors care. I have sat through three, three hour lectures on migraine in the last couple of years. And she got me into a plastic surgeon and I was able to get free breast reduction.

Through my health clinic I saw a phycologist, it was a place for me to talk. It wasn’t like she could change things. I am thankful for the time I spent with her. She had now left for a private practice. I am not sure I want to see someone else.

I went to a psychiatrist before Christmas and he couldn’t understand why I was sent to him. There was nothing again he could fix. He said if he was left like me injured and no income he would be angry to.

I have always been a person who dealt with things through truth. And truth would be knowing what is actually happening to me and has happened to me. So my Doctor showed me on her computer CVS. She also said this was as close as she could explain what happens in that fourteen hours of abdominal migraine. I have done extensive research on dehydration and I understand why the brain and bowel quit talking. She has also told me that this is mine till I die. And she feels there is nothing out there that will change this just things that will make my quality of life better.

I look forward to learning much from all of you
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ginny

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Reply with quote  #4 
Your doctors have run testing such as upper and lower endoscopies, MRI of the head, Metabolic testing during a cycle, Ultra Sound of your kidneys?  There are a variety of tests that are commonly done to rule out conditions similar to CVS and to help rule in CVS.

We have had message board members tested, and then years later they find out that what is wrong, is not CVS and is a treatable condition (yay for them).  One that comes back to me, esp in light of your endocrine history, was Addisons Disease.  I don't know if the persons posts are still available to search on the message board.

The vomiting associated with CVS is said to be the most severe form of vomiting. 

Have you tried any of the prevention medications?  The tricyclic family is the most common, amitriptyline or nortriptyline.  The dosage often needs to be adjusted along the way.

Some have added in a beta blocker.  A lot of people do well on the supplements, I was given permission to copy and paste the updated supplement dosages.  This information is pinned on the message board main forum.

Sometimes it is good to have someone who will just listen to you.  Maybe a new therapist would be helpful, you can bounce ideas and sometimes just talking out loud will help.  I am pretty sure no one in my family actually "listens" to me (except maybe my dog 😉 ).

Sounds like you are very proactive and knowledgeable about your body and your health.  



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ginny CVSA Moderator
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Debbieh

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Reply with quote  #5 
Ginny again thanks for conversing with me. In this last year I had a colonoscopy and a endoscopy and a cat scan. And twenty two years experience. I never wanted this blamed on my weight so about ten years ago I really started to take care of me. I went from 190 to 120-125 and I keep it there. I was a smoker till 50. That green/brown bile I throw up I thought was nicotine lol but I quit and it kept coming. I get migraines, abdominal migraines and abdominal CVS. At Christmas I had a three day abdominal with no vomiting. My sympathetic nervous system was damaged. My doctor tells me they know very little about this system. I have no family history. My CVS is always with an abdominal and the abdominals not always but generally morph out of a migraine. My Doctor led me to look at CVS because I have this crazy 14 hours of non stop vomiting. Always bringing up something every couple of minutes.

Here’s is the crazy part to actually vomit outside of this. I have to put my fingers down my throat many times before I can vomit.

I don’t knew anything Ginny I feel like out of ignorance I did myself no favors. But I try and do healthy things in my activities and my diet. My dad was on a lot of drugs when I was growing up. I got a real bad taste. Circumstances allowed me to be a strong independent women. This took everything from me but God gives me the strength to live and to want to live despite the journey. And since my doctor says it’s with me till I die, I have to solder on.

I look forward to learning from all of you as I trust you the sufferer more than any medical person out there.
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wynnak

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Reply with quote  #6 
I would not let your doctor discourage you. My son was completely incapacited by CVS. Unable to stand, feeding tube, PICC line... he almost did not make it through his worst episode. He went in to organ failure...

We got doctors that were focused on trying to get him to not be episodic. He has gone to college, is driving and working on getting a job now.

I won’t tell you that it is easy, we have daily maintenance. But we manage. It’s about living today, but taking time when you need it. We hope for periods of remission type situations.. or where were out now.. where we have 3 days of managing nausea a month.

If your doctor is willing to learn or even consult, they can go on the CVSA website and submit a request to consult one of the medical advisors.

Having a doctor that works with you is a huge help.

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Debbieh

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Reply with quote  #7 
Thank you. So interesting how we are all on the same journey yet experience differently. I wish this was all here when I was my young self. It’s my young self I hurt. I have not given up at 60 I am coming to an understanding and acceptance. The things I learned to do for myself and the few drugs I use allows me to not be freaked out anymore. I had no one believe me or help me, came up in a time where you be a good little solder. Suck it up and move forward. I am thankful to finally not be expected to be responsible I take good care of me. I am not any of the things I have but finally the things I have, have a face.
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wynnak

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Reply with quote  #8 
Part of our anxiety issues was worrying about the next episode or treatment when I happened. Maybe the meds helping you not be so anxious will help the episodes not be so prevalent. As we learned to manage our anxiety and stress, it really helped.

I know that growing up in an early time did make it more difficult. You should b proud of yourself for soldiering on. I am.

Fight the here and now. Bad understandable nag of health issues is an issue. But all it takes is a doctor willing to learn. They are out there.

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