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Posts: 167
Reply with quote  #1 
 Ginny wynnak and Brosmom
It seems that not very many people are around lately, what's up? I haven't been sick for a while and got busy living, and not going to the hospital in months I haven't been here much.
But I see that not many people are posting, I wonder if with the onset of summer the people are just busy or is CVS more active in colder months?
I know I have had CVS attacks in the summer set off by over doing it in the heat so I learned to be careful in the heat.
But I see the posts on the adult side of the CVS message board have slowed to nothing for the last 2 months. 
Is it this way every summer?
Genny-when I told about adding the new drug combo ( Amlodipine and Desipramine) on top of the Aimovig I was already trying, you said " how are you going to know which one is working? I was so freaked out by the rapid fire attacks I was having last winter that I would have tried tieing a dead frog around my neck like the which Doctor suggested.
Now it has been about four months since my last visit to the ER and besides not knowing if any one of them is working and maybe it's just the usual thing where I have a few months off before the monster comes back and the whole thing starts over again.
The only thing I can say about all the meds I am trying and new life style , Cut out (Alcohol and red meat) is I have not been sick in about 4 months, I have had to use my emergency med kit quite a few times (sumatriptan, Zofran,norco and hyosciomine sulfate) so this all seem to be the usual.
Is this a normal summer for people with CVS?
Thanks ladies for all you do !

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Posts: 4,816
Reply with quote  #2 
We have been wondering where you were and hoping it was all good news!  Glad the combo of meds is working and if you are doing well, I don't think I would change a thing.  I agree about tying the frog around your neck-- if it works, then fantastic.

Many do have heat set off their CVS symptoms.  As far as so few MB posts, I hope some of this is due to improvements in medical care so people don't need us as much.  I think there are so many FaceBook groups that we have lost out to these social media groups.  Not all the FB groups are CVS sponsored and some have incorrect information.  Still I do think people are going the route of FB and maybe other support areas as well.   Great to hear from you and I sincerely hope things keep improving for you.  

Keep living life!  

ginny CVSA Moderator

Posts: 167
Reply with quote  #3 
Hey Genny
Well I have been working now that summer is here and our poor little town has been just over run by people from down south (I live in central Oregon) IT REALLY SUCKS HERE ! please don't move here! Our little town has jumped the last few years from 1200 to 5,000 so there is so much work here! if you know how to build houses and the like.
I know how to build houses so there is too much work.
In my life before I retired I was in the jewelry business for about 40 years and was trained in gemology but as a young person I learned to build houses and many aspects of that trade so now that I am retired I have something to do!
The jewelry business has always been kind of mysterious to people and the people who practice the trade would like to keep it that way, in the old days it was called Alchemy. Building stuff is the same idea, people are so afraid of electricity and getting shocked they will pay anything to have somebody else do it. And it is so easy that anybody can do it!  And that's I fact! I think.
Hope these new guide lines are more helpful the next time I go to the ER, those Dr.'s act the same way as we were taught in the jewelry business to talk fast and use words they know you will not understand but try to blow by you knowing you wont understand and counting on you being ashamed about not knowing what they are talking about and we the poor patients shake our heads like we understand.
So that's where I been, working like a regular retired person doing anything I can to try and make ends meet and keep busy, My friend Beverly is 87 and she never gets sick and is in great shape for 87, she says the trick is to not sit down during the day and just keep busy!
I guess I want to live that long, and with CVS , well I have been living with it since 1991 and it certainly has been a challenge if these meds do work and I don't have anymore attacks, well that would be great! lets wait and see. Ten months ago I started on "AIMOVIG" 
I asked the MB if anybody was trying it and nobody was so I said I would be the lab rat and try it
Then I heard from this lady who said her CVS had been cured by taking amlodipine and desipramine and she never had another cycle so I got some of that as well.
That's when you told me how are you going to know which one is working?
And that's where I am now! is it working? which one is working? I don't know but maybe one day I will try cutting one out or something, the lady never told me if she was still on the meds or if it cured it and that was that.
All I do know is I haven't been to the ER in about four months and I'm getting cocky! But by now after this many years of living with the monster I kind of think it will never go away! or at least I am resigned to the fact that it's just part of my life and I am lucky to be alive.
                                                                                                                           Thanks ladies for being here for us!


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Posts: 1,188
Reply with quote  #4 
I think that Ginny and I have been around long enough to know that there are up and down times on the MB.

It helps if there are conversations going on on here. 

Hard for new people to start them. So feel free to start new topics.

Steve, I agree with you that people would rather pay someone else for their problem to just go away. I am not like that at all.. I just replaced the brakes on my in laws car because the place they were getting an estimate from was ripping them off.. and I have been working on cars since I was 3 years old. My kids have to know how to check and change their oil and how to change a tire before they can get their license 😉 I'm a mean parent. 

I put the the ridge cap on a shed I have been building for a little over a month now. I know that seems like a long time, But Like this next week, I am out of town frequently. In the last month I have been to 3 conferences and weekends are the only time I have to work on it. This next week I have a presentation to a UPS facility, and a conference in Washington DC. So considering what "downtime" I have, I think we did really well constructing, building and roofing the shed.. painting, caulking and all the little things that no one thinks needs doing when they aren't doing it themselves.   I have been replacing all of our fluorescent lights with new LED energy efficient ones. I am not afraid of wires and electricity 😉 Replaced the fan in one of the bathrooms.  I always have projects going. Built shelves and doors for reused cabinets to update my laundry room.. being handy around the house is a good thing. 

In my other spare time.. or maybe it is lack of sleeping time.. I make cakes. Had a little side business for a bit. But, I have devoted more and more time to advocating for CVS and offering support since we know how awful it is. 

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