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scooky1

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Reply with quote  #1 
First I want to say that I am still using the "AIMOVIG" once a month injection but saw no real help from it "I think" I have been told by my RN friend at my Dr.'s office that she saw some thing as far as the stats/ numbers went! I have one more dose and think I will stop after that and see what happens.

I was in the hospital a couple months ago when a lady called me to set up an appointment for endoscopy, she worked in the hospital. I told her I was up stairs in a room, she asked what was wrong with me and I told her about CVS, she said "Oh I used to have that!" and I said wait a minute what do you mean you used to have CVS, are you sure that's what you had. She told me about her Dr. and how long she had it and that "yes! he told her she had CVS"
He prescribed two meds for her "AMLODAPINE and DISIPRAMINE" and she claimed she never had it again. don't know if she still takes the meds but I will find out.

I got my Dr. to prescribe these two for me and I am now on my 2nd month with no visits to the ER yet.
I have had to fight off a few attacks but things seem to doing better!

PLEASE don't jump to conclusions on this because we all know this illness will come and go at it's will.
We do not control it, it controls us! That being said I can't help but feel giddy at the thought of being cured!, as I told a long time friend the other day about the new meds and he said "Do you know how many times you have said this to me over the years?" I have said this many times only to end up in the ER just when I start feeling cocky.

So I don't know what to say to you guys but I will keep the Board advised of my status and keep my fingers crossed.

                              Ask your Dr. if this could be right for you! Stay Well guys, Steve
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MiamiLargo

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Reply with quote  #2 
Thank you!!  It is great to hear this news!!
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wynnak

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Reply with quote  #3 
Glad you found a combo that works for you!  I would be hesitant to change meds having that level of success. Look forward to the updates.
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scooky1

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Reply with quote  #4 
I kept the same mix of meds as suggested and it has been almost another month with nothing to report, at least no CVS episodes except the esophageal cramp thing. once you know what it is, these episodes aren't as scary they just hurt so bad you have to stop and medicate lay down and wait for about 20 minutes for it to stop. 
I will stay on the med mix and hope for the best!
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ginny

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Reply with quote  #5 
Please keep updating us.  Such great news.  And if you are not scared then it loses some of its power over you plus loses the anticipation and anxiety that help feed the whole cycle thing.

Stay well!


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ginny CVSA Moderator
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scooky1

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Reply with quote  #6 
So like I said " I had been having those esophagus cramping episodes" for the last week or so , and fighting it off with the usual stuff/meds and then this afternoon I was hungry but didn't feel like cooking so went to order some food and while I was waiting it hit me, I got the feeling and knew it was about to happen.
I went to my car where I keep my meds and used Sumatripton injectable,  sofran  
sublingual, hyosyamine sulfate sublingual and morphine and sat there waiting for it to go away, it didn't so I went home used a second of meds and lay on heating pad but after about an hour I lost it and called for the EMT's they picked me up gave me some Zofran and off to the ER 20 miles away, everything was as usual got to the ER, on the table and realized it was going away so I told the nurse how bad I felt about wasting their time and went home.
I know it was a real CVS onset, so if I had only waited another hour I wouldn't be expecting a 4k ambulance bill.
What do I make of this? does this mean the meds aren't working or does it mean they are because I have been episode free for about 5 months and I ended an episode without any help from them (ER) people.
It's about four hours late now and it's like it never happened, a little bit messed up from the drugs but feel like going to work in the morning so I guess I'll just have to wait and see some more.
                                                    Well OK then, Lets see what happens next
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ginny

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Reply with quote  #7 

Do you think that having the cramping led to you stressing more about maybe having an episode or maybe  there would not be an episode?  Is there any kind of anti spasmotic you can try when you have the cramping?

It sounds like your meds are very beneficial.  CVS is a long standing problem and maybe it cannot just "go away" but the cycles will lessen and lessen.  

I hope this is the last 4k you ever have to spend of rescue.  You seem to have a good support preventative mix of meds, maybe adding in an anti spasmodic will help, and you have found that maybe medicating at home will help you prevent the dreaded rescue and ER.   Prayers are with you.  

Try journaling what you remember and keep journaling.  There might be something that happened that tripped you over the edge into a cycle.


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scooky1

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Reply with quote  #8 
Well it has been a horrendous few days, three times to the ER via ambulance the first time my meds kicked in and I went home (Saturday)

(Sunday) Went Ok but didn't feel great, had the feeling it wasn't going away. 

(Monday) came and it was on, I lasted as long as I could, went to the hospital in the other city (Redmond)I didn't know the ER has a policy there, (They don't use narcotics on people with CVS) the other hospital in (Bend) knows me better and they don't have the same policy it seems.

Then Wednesday
about 2:00am the same thing but I took along my book that my RN friend helped me make up with all kinds of info and a copy of the empiric guidelines - It's about 3/4 inch thick. The ER Doc looked at it and said OK "I will give you one dose of dailaudid but this is a one time thing !

I remember a few years ago I was ranting about having your paper work together ,well this time it really paid off because that one dose really helped. anybody wants to know about paper work go back in old posts.

I got the feeling the ER Dr. was one of those people who look at us CVS'ers as???? well I just don't know but they can be so inhuman. I got more of the meds I had run out of while I was in the city and things seem to be quieting down but so weak, hard to walk.

 What do you guys think is all the stuff I have been doing all for not? at least I knew this could happen so I am not to surprised.

And perhaps you're right, I have been working very hard for the last few weeks to the point of exhaustion, that could have something to do with it, but then again this is/seems to be the same as always.

Oh, I see better keep a record, got it!


,
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ginny

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Reply with quote  #9 
I think if you can continue to lessen the cycles then your new med regimen is worth it. It also might be time to do some medication tweaking on doses.   Desipramine is a tricyclic as is Elavil/ Amitriptyline.   Ami needs to be tweaked from time to time. Maybe the same is true of Desipraimine?

Interesting on the roast beef. Any way to find out if there are additives in that brand?  Maltodextrin can be a hidden form of MSG. MSG and soy seem to be frequent triggers in CVS.  

And of course, as you said, working hard and long hours.  It might be that the working, the anxiety about almost having a cycle over the weekend, the roast beef and all were your tipping points.

As to getting one Dilaudid, did that single dose help you enough? The Redmond ER sounds awful.  The Bend ER sounds like it might be a teachable department.  Maybe CVSA could send the director a professional phamplet about CVS?

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scooky1

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Reply with quote  #10 
Thanks
No the one dose of Dailaudid didn't completely knock the attack out but with what ever else she gave helped enough to get home.

One time I went to St. Charles Hospital in Redmond, Or. they have two, one in Bend, Or. about 20 miles apart, each the same distance from my house'

A few years back I went in the Redmond site with a full blown CVS attack going on and this nurse had the nerve to ask me "how many hospitals or urgent care places had I been to that day" inferring I was going everywhere in town looking for drugs! The ER Dr. was standing right there and didn't say a word to her.

The Hospital in Bend is always jam-packed with so many people the wait can be 3-5 hrs but they have been treating me better in Bend, it's still hit or miss weather the ER Dr. there will be nice.

When you say tweeking those two meds, how do you mean ? up or down. how have you seen it done. How would be a good way ask him, any reference for him to look at etc.

Thanks guys!

Oh yea, huge weight loss 15 lbs one week
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ginny

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Reply with quote  #11 
That weight loss is huge, keep a watch on it.

When you see the prescribing doctor just let him/her know that you have had a break through episode.  There is quite a bit of information on the MB about having to increase the dose of Amitriptyline if the patient has more episodes.  Ami and Desipramine are related so I am just assuming you might need a slight increase.  I dont know anything about your other medications and if they should be increased or there is a standard dose.  Always check with your doctor about changes.  



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kelewis

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Reply with quote  #12 
It might be helpful to ask your doctor to order a blood level on the Desipramine. My daughter is working up her dose on Amitryptiline and the CVS doctor we're working with got her up to a dose that works for some people and then got a level. The listed effective level is 150-200 ng/mL, but her level last week was undetectable, even though I know she's been taking it every night. He said that's not uncommon, that some people need significantly higher doses, so we're working up on the dose and checking a level again in a few weeks. She's still in a cycle of frequent vomiting so fingers crossed that it helps soon.

I looked it up online, and found the following:

The reference range for desipramine is as follows: Normal range: 100-300 ng/mL. Potentially toxic level: >500 ng/mL.
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scooky1

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Reply with quote  #13 
OK, Thanks guy's I will talk with my doc's office 1st thing tomorrow on the desipramine
what about the amlodipine, is that med the same? should I look at increase on that as well?
or is she only on the desipramine.
I have used amtryptiline and it caused me to have Tinnitus as one of the sides, how old is your Daughter and has she complained of noises in her ears?
Mine is bad and introducing the disipramine increased it but I have gotten used to it.
Kelewis, Thank you so much for looking that up I will use the info asap! 
Ginny,    You're wonderful
                                                                                                                 Thanks Guys,Steve

OH yea, sorry again for the ranting. try to be better next time!
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kelewis

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Reply with quote  #14 
Amlodipine is more often used as a high blood pressure medicine. I don't think there is any recommendation for checking levels, or any established therapeutic level. I would just check with your prescribing doctor about whether there may be an indication to go up on the dose of that medication; likely the most important thing is to monitor your blood pressure while on it. Also, generally best to just change one thing at a time to monitor effect (when possible!)

My daughter is 15; she has not complained about tinnitus and I hope that she won't!

Hope you're able to get some relief!
Karen
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scooky1

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Reply with quote  #15 
Hey Karan
Thank you so much for that info and I am waiting for my Dr. office to open so I can talk about that. stay tuned
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