Registered: 1523736571 Posts: 4
Reply with quote #1
I am posting on behalf of my husband who has been struggling with CVS for 18 years. The beginning of his CVS was very infrequent and he didn't start having regular reoccurring episodes till about 7 years ago. Ironically, the reoccurring episodes started about 3 months after our first daughter was born.
We started 7 years ago with multiple ER visits for severe abdominal pain and continuous vomiting with no relief. The ER that we were going to recommended that we see a GI doctor for his condition. We did that immediately after several months of seeing the GI doctor with no relief in his symptoms or vomiting our GI Doctor sent us to a Research University hospital in Chicago. We went there to see a GI doctor who admitted my husband right away for severe dehydration and no relief in symptoms. While admitted at this hospital we were educated on, and he was diagnosed with CVS. We started seeing one of the doctors that helped with his diagnosis on a regular basis. At the time my husband was a regular marijuana smoker. This doctor informed us that his use of Marijuana was the cause of his CVS. Of course, my husband didn't buy it. He couldn't understand that the one thing that provided him some relief from his CVS is what was causing it. I began to do further research on the topic and discovered CHS. I was convinced that his was what he had. We went on to see several doctors from the original doctor that diagnosed my husband because he just wouldn't believe that this could be the cause. We finally landed at a primary care doctor that he still sees to this day about 3 years ago. Keep in mind that at this point he had been dealing with several episodes a year with 4-6 weeks of relief at most between. He had tried numerous different medications including all the ones recommended for CVS. At this point I began to grow irritated with him. We were about to have our second child and he refused to discontinue the use of marijuana all because he couldn't accept that this could be the cause. I basically told him that if he wanted to ignore the facts and continue putting himself through this pain agony that I wasn't going to sit here and watch him do it anymore and I was not going to subject our children to it anymore. Well that kicked his butt into gear and he discontinued the use of Marijuana. Within a week he was symptom free and he felt great. He started putting weight back on, he was 130lbs from all the vomiting and got back up to his 170 within weeks. His doctor was thrilled with the result and we thought that he was in the clear. He continued to see his doctor on a monthly basis just so she could monitor him to ensure that everything was going back to normal. He went 6 months, our longest time without an episode, then I started to see signs that he was going into another episode, extreme tiredness, lack of energy, decrease of appetite, and sure enough 2 days later he was back into a full on vomiting cycle with no relief and severe abdominal pain. Of course I immediately blamed him for smoking marijuana behind my back. Thinking that he thought he was in the clear so he could go back to smoking again. Well I was wrong. We went to see his doctor after 2 days of non-stop vomiting and she tested his urine like she did every month she saw him and he had no marijuana in his system. This episode occurred when he wasn't smoking. Needless to say I felt like a total jerk. This brings us to now, 3 years later, he is still having regular episodes, they haven't been as bad as in the past, but they still last anywhere from 1-3 weeks with about 4-6 months in between sometimes less like 1-3 months in between. His doctor is at a loss because all the medications that she tries only seem to give her a result of 4-6 months without an episode. She had him on a medication used to treat chronic nerve pain for a while which had him on an 8 month stretch with no episodes but then he went back into an episode and couldn't keep them down. The side effects of suddenly stopping this medication are intense so she weened him off in fear of there being permit side effects from sudden discontinuation. Since then she has been hesitant to put him back on any other type of management medications for fear of him going into an episode and having to suddenly stop the medication and having bad side effects. The only thing that seems to help his episodes is pain medication. His doctor does prescribe it during the time that he has severe episodes so he will stop vomiting but she obviously can't prescribe the pain meds for preventive care because of the long term risks of taking them. In summary he smoked marijuana and then stopped smoking marijuana and is still having reoccurring episodes. He is no longer a regular marijuana smoker and only has a little bit from time to time when he is experiencing a bad episode and can't have pain meds. During this time he is able to feel relief and stop vomiting for several hours. His doctor does not know what to do with him and she has been trying to find another doctor that might be able to help him better than her. I am at the point of feeling like there is no hope again and feeling like we are starting over with the doctor thing back to doctors referring him to different doctors because they don't know what to do with him. He misses a ton of work and it impacts us severely. He misses out on most life events because they usually trigger episodes. I can't remember the last time he was able to enjoy a holiday, birthday, and summer. We can never go on vacation because I am terrified to book anything in fear that he will go into an episode and we won't be able to go. We don't make any plans more than a week in advance and even that scares me. He has a poor quality of life and feel helpless. His family doesn't understand his diagnosis and therefore his mother is constantly on me about not taking proper care of him. I am the only one that cares for him. I take him to all of his appointments. Sit for hours in the ER with him. Get him anything he needs, I rub his back when his is sick, I make sure he has all things he likes to drink even though he is going to throw them up. I'm sorry for the long post but I just want to help him feel better so bad. __________________ Katelyn Brown
Registered: 1111176341 Posts: 4,592
Reply with quote #2
I think I read on the Cannabis Forum that you are making an appointment to see Dr. V? Hopefully that will help.
What I think I am seeing in your post is a period of time that you can tell there is an impending cycle. During this time, will the doctor help create a plan to start prevention treatment rather than waiting for the cycle to start and then trying to abort? The pattern sounds stress related, very common. In your case, there is lots of good stress that actually seems a bigger issue than bad stress for those who have CVS. Maybe biofeedback would help when there are impending exciting things going to occur--birth of a child, vacations, holidays. While trying to manage the good stresses, would the doctor try anti anxiety medication? Pain meds, and many of the CVS medications to prevent cycles, can all slow down digestion. Slowed digestion can lead to nausea and vomiting. Dr V has stated that the patient with CVS will have more rapid gastric emptying when not in a cycle and things slow down as a cycle approaches. Trying to stay on top of the digestion could be helpful. The difficult part of this is that diarrhea or runny stools are often treated with something to bind the stools when actually the runny stool is a result of the stools running past dried up stool. Has he tried a journal? Emotions, weather, events, sleep changes, foods and more can all enter into CVS. For food, it might not be the particular food but can be certain foods mixed together. Some have done well with diet changes such as the Paleo Diet or Gluten Free or any number of different approaches. Most who respond to diet changes have taken additives out of their diet. MSG is a common additive that seems to be a trigger for many. Some do very well on the CVS supplements. These can be found Pinned on the Message Board Main Forum (which has been renamed as "Category"). The monthly support group phone call might help as well. Do you have a copy of the Empiric Guidelines for CVS? Passing a copy of this to your inlaws might helpful for their understanding (and hopefully encourage them to help care for your husband too). There are various studies under the CVSA Research Tab that might be helpful. Please let us know how your husband is doing. __________________ ginny CVSA Moderator
Registered: 1523736571 Posts: 4
Reply with quote #3
Thank you for responding Ginny. He has only tried one anti anxiety medication. I have been talking with him more and more about the possibility of needing to go on one long term. He struggles with anti-anxiety meds and anti-depressant meds because he doesn't like the way they make him feel in the long run. We have had a very difficult journey since he has been diagnosed with CVS we have been rejected by several doctors, been told that there is no cure for this so he just has to deal with it by several doctors. We finally found his current doctor about 2 years ago and she is very sympathetic to his illness, she tries her best to help him and she sees him ASAP when he is beginning an episode. The only problem is she has no idea what she is dealing with. She is not educated on CVS and she really doesn't know what do with preventive care. I was hoping that if we were able to see Dr. V she might be able to guide us and his current doctor with better managing his illness.
I am constantly trying to do research on CVS and wish I would have utilized this website more in the past. My nephew struggles with this illness also and my Sister In Law is the one that told me to check this out and look into seeing Dr. V. She has my nephew under control and he hasn't had an episode in over 2 years. They have switched their diet to all Organic foods. I have been working on doing that with us as well. I am hoping it might be a good approach to diet. I do not have a copy of the Empiric Guidelines of CVS, is that available on the CVSA website? We have tried some of the supplements but haven't had much luck with them. I think this is mainly because we are trying to do this on our own and we just don't know what we are doing with them. I will take a look at the supplement guide. At the moment he is not doing well. He has been actively vomiting for about 3 days now and I feel we have a trip to the ER coming if we can't get in to see his DR tomorrow. __________________ Katelyn Brown
Registered: 1111176341 Posts: 4,592
Reply with quote #4
The fact that there are others in your husbands family with CVS is unusual but probably will be very helpful for the doctors to link to something like a mito disorder.
Your doctor can try for a telephone conference with Dr. V and I think getting in to see her will be helpful. The CVSA Family Conference will be this June. This is a wonderful time to get to meet others who are dealing with CVS and should your husband become ill, the ER is set up for CVS patients. One of the best parts of the conference is the "Speed Date a Doctor" where you get to sit down and actually talk to one of the doctors for a bit. If you are buying over the counter drug store supplements you might not be using the right form. If possible and especially while trying them out, with the doctors approval, try HealthyOrigins.org and or Epic4Heath.com for the CoQ10. Last I knew you could call in for advice on the supplements at both places. Calling in your order will bring you a discount as well. HealthyOrigins suspends kaneka CoQ10 in olive oil. If you get a CoQ10 that has vitamin E in it, you are probably getting soy. Many with CVS do not do well on soy. Epic does have soy free forms of CoQ10. Also, at the drug and health food stores it is possible to happen on a synthetic form of CoQ10. You want natural and you want the brand name to be reputable enough that you can feel confident each dose is actually what is stated on the bottle. Don't start Vitamin B until after the CoQ10. Carnitine can be prescribed for a savings on cost. If not, be sure to not buy D Carnitine. Some are ok on Acetyl Carnitine but mostly you probably want L Carnitine. If he has a mito disorder, the supplements should be at least somewhat helpful. Not while in a cycle. If he does not do well with any of the antianxierty meds or the antidepressants, maybe the ones tried can be changed for another. Ativan has not taste and can be melted under the tongue. Ativan can help with nausea. For the actual vomiting, is there a med that helps? For us it was a mix, usually IV, often of an anti emetic, Ativan, sometimes Thorazine and more. We actually aborted at home using Benadryl. Some of the sleepy antihistamines have anti emetic properties. It is very important to get deep sleep to "reset" the brain. The antidepressants that are commonly used for CVS are not at an antidepressant level. Medication levels will often need to be adjusted up. The Empiric Guidelines and other helpful information is on the CVSA web page. His doctor might find the information very helpful; Your husband most likely will not be her only patient who has CVS. I assume he has completed his testing? At the ER, hopefully they will do a kidney U/S to check for UPJ disorder, try the IV as suggested by Dr. Fleshier in the Empiric Guidelines, run blood tests as Dr. Fleshier suggests. All this can be helpful in trying to establish if there is something else going on. Has he had a gastric emptying test, MRI of the head, blood work up and more? Tests can be found on the web page and also suggested testing in the Empiric Guidelines. Good luck, please let us know how you are doing. __________________ ginny CVSA Moderator
Registered: 1523736571 Posts: 4
Reply with quote #5
Thanks once again for the info. I should of stated in my last response that my nephew is on my side of the family not his. So he is the only one we are aware of from his family that has this disorder. He has had just about any test possible, CT's of the abdomen, GI scope, colonoscopy, gastric emptying, Kidney, gallbladder, testing on the pancreas. I am not sure that we he has ever had an MRI of the brain, is that something that is usually performed on a CVS patient? We are from a very small area so oddly my husband is his Dr's only CVS patient.
I found the Emperic guidelines on the website and printed them. We will hopefully be seeing his dr this week and I will bring her the info and speak with her about getting into seeing Dr. V. We have never been able to abort a cycle at home without a pain medication. Usually we can only abort with that pain after 3-4 days into the cycle. We have a lifetime supply of zolfran, but it doesn't seem to work for him at all. We have also tried phenergan suppositories in the past and he would feel a short bit of relief here and there from them but the doctor that was prescribing them wanted him using them in emergency situations only because it can cause facial paralysis that is not reversible if used long term or frequent. He was the only dr that would prescribe them to him and unfortunately he referred us on to another doctor because he didn't feel he could help my husband. I am hoping that we can eventually find a system to abort episodes at home without the use of a pain med because this ER business is so rough on him. I am going to talk with my dr about Ativan, I have been seeing that a lot on other posts. I know my husband has had it in the ER before but I don't know that it has ever been successful for him. __________________ Katelyn Brown
Registered: 1111176341 Posts: 4,592
Reply with quote #6
For anti-emetics such as Zofran and Phenergan, not everyone responds to these medications or to any other anti-emetics. Each works on a different part of the brain. Phenergan is an antihistamine. If he responded to this medication, be might respond to other sleepy antihistamines. My daughters first long CVS cycle was broken two or so weeks into the cycle with Atarax.
For us, I think it is more a matter of a proper mix of medications and maybe mostly getting into a very deep sleep. Usually a couple of days admitted for IVs with medication and sedation would result in being completely well on waking.
Not every CVS patient will have a good (or bad) response to the same medication. With the warning of an impending cycle, you could have enough time to start to treat to prevent the actual cycle.
Other things to try are keeping regular sleep and wake cycles. If you review some migraine preventative suggestions you could also have a positive response. Regular patterns of sleep are often mentioned in migraine prevention.
There should be some good suggestions on migraine prevention in the archives on this message board. A couple of people swore by a book on preventing migraine -- the book name would also be in the archives. You are on the right path to find answers. __________________ ginny CVSA Moderator
Registered: 1533990986 Posts: 3
Reply with quote #7
It sounds like we are having very similar experiences! Let me know how things have been going to you and your family. My boyfriend is suffering from CVS or something very similar. We do not exactly know because he has been using cannabis in between episodes. This last episode lasted about a week and I’m hoping that pushed him enough to stop until we can find some answers. My boyfriend usually cycles about every 3 months and his episodes will last from 4-7 days