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Ansan

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Reply with quote  #1 
Anyone having this experience? Starting to Think that this is the trigger. My first attack was spring last year and during the summer I had frekvent attacks. I also had symptoms (though few) like hot flushes but the big thing was that I had no period - since spring. In August no period and no attackas. In december the period came back and so did the attacks. Jan until recently regualar periods and no attacks except one small (was never small) now in May. Last period was wierd and now its delayed. Last week I had those hot flushes again but less than 15 times and not for a few Days. And yesterday an attack. Doesn't it seems like it could corralate? 

During these last 6 months I have done all the testing you can imagine to rule out other things. I have a doctors appointment in july with my specialist to discuss where we go from that.

Whats your opinion on this?

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ginny

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Reply with quote  #2 
Hormones are a common trigger for CVS attacks.  I would think that menopause onset could well be a factor.  I know a few people whose migraine headaches ended after menopause and hopefully the same will be true for you once you have completed the process.

Your doctor might have some suggestions either HRT or other approaches to help.  Many with CVS are very sensitive to heat. Thot flashes and hormone changes seem logical to me as triggers.

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KateSH

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Reply with quote  #3 
I do believe that my CVS started with peri-menopause. However, I am fully through that and menopausal, and still get CVS. Taking supplements (B-100, L-carnitine, CoQ10) seems to have helped shorten episodes from 24 hours to about 18 hours. I also have type 1 diabetes, and that somehow seems connected. I see a specialist in July, and can not wait.
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ginny

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Reply with quote  #4 

If you search the archives you should be able to locate postings from others who also struggle with diabetes.  If I remember correctly, with adult onset diabetes there can be delayed gastric emptying which does seem to play a strong part in many adult patients.  

I hope the specialist has some help to offer.

For the supplements, I just reviewed some information the other day and was surprised to see vitamin C added to the mix.

The way I understand the supplements is that CoQ10 should be the natural (Kaneka) form, preferably pharmaceutical quality (at least until you are established, this Pham grade should offer consistent dosing of a high quality product).  Be careful of other ingredients-- vitamin E added might be supplying you with a soy based product.  If during a stressor you feel you need more CoQ10 and your product contains something like vitamin E, you could overdose on the "E".  Before adjusting the dose check with your doctor.  Usually CoQ10 is  split 2 or 3 times per day.

LCarnitine can be prescribed for an even dosing or purchased from a company that also supplies Pharm quality CoQ10.  I think the superior over the counter Carnitine is Swiss or Italian-- it has been a long time since I reviewed this data.  Some do better on Acetyl Carnitine, most on L Carnitine. (Never take D Carnitine.)

After CoQ10 is established, Vitamin B or Riboflavin is often added.

Some are also using Magnesium.
And finally I just read about vitamin C.  

I dont know if when you are fully finished with menopause how even hormones remain.  That is an interesting topic.

Please let us know how things go for you.



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ginny CVSA Moderator
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KateSH

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Reply with quote  #5 
Ginny, thanks for the supplement info. One more thing, in case it helps. My first CVS episodes lasted about 1 year. I did not know what it was. Then I had a 3 month break from CVS followed by a 19 month break during peri-menopause. I thought it was gone, but it came back in the same pattern, and has been back for 17 months. Happiness is my most known cause for episodes. Other stress can bring it on too.
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KateSH

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Reply with quote  #6 
Oh, also I have the opposite of gastroparesis, my stomach empties fast.
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ginny

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Reply with quote  #7 

Dr. V states that CVS patients have increased gastric emptying.  As an episode is impending, typical is for the gastric emptying to slow down.  Lots of the meds can lead to delayed emptying or constipation.  Sometimes what seems to be loose stool is actually liquid stool running around dried out stool.  It is confusing to figure things out.  BathBoy did a great job with his journey through figuring this stuff out.  He was resistant to the idea that his diarrhea was actually constipation.  He was finally correctly diagnosed and his CVS improved -- not sure if it is gone completely or not.  Turns out his mom had a similar condition that he did not know about.  Try reading a bit of his posts in the archives.

I think we hear more about happy stress than unhappy stress as a trigger.  trying to keep your emotions on an even keel is not the most fun thing but if it can help you to not cycle then it is worth it. 

The entire condition of CVS is confusing. 


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wynnak

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Reply with quote  #8 
I agree with the hormones, but do not have much experience with CVS and female hormones since it is my son that is affected. 😉 But have met and talked to many CVS patients that it was definitely a factor. 

For my son it was growing.. Still hormone related. Google Hormones and CVS there should be a paper that pops up talking about it. One of my favorite articles. 


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Ahmelcher

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Reply with quote  #9 
Hi, everyone. I was diagnosed with CVS in early 2016. I take a cocktail of CoQ10 (the straight ubiquinol type), L-Carnitine, Protonix, B-100 and Spironolactone as well as Zoloft in the evening. I also have a gluten free, beef free and limited dairy diet.

I started losing hair in 2016 and now added Rogaine to the mix.

My last full blown vomiting episode was June 6 (it's now November 15). This is the longest that I've gone without a full episode...I did abort one with a phenergan "bullet," but it appears to be in a remission.

It's pretty clear that I may have been/am going through menopause. I had a hysterectomy in 2014 but still have my ovaries. The hair loss issue, along with osteopenia, indicate that something has been up.

I had migraines as a teenager right before my period started; I've been asking my doctors if the CVS could've been triggered by hormones, but they all just kind of shrugged their shoulders and said my hormones were "normal." It's bewildering. I'm tempted to begin adding red meat back to my diet just to see, but when I recall how awful my episodes were, and how I'd need IVs for rehydration, I just choose to not fix what ain't broken.

Anyone else have a similar experience?

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wynnak

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Reply with quote  #10 
I'm glad that you finding something that works for helping your CVS. 

For the Hormones, it can have an impact. Hormones increase.. so not having abnormal hormone readings aren't necessarily uncommon. It is the spike that can be the trigger. It can be helpful to take an anti-inflammatory for 3-5 days before you cycle to help lessen this. Migraines and hormones are tied. I have horrible migraines and they are impacted by hormones. That was when I started having migraines.. around my cycle. 

Hope it continues to work for you! 

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KateSH

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Reply with quote  #11 
Hi AHMELCHER, personally, staying off red meat is probably smart unless you always and only eat organic high quality meat. Commercial grade meat is always loaded with chemicals, including hormones. Chicken is bad this way too, including eggs.
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starstuffwithCVS

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Reply with quote  #12 

I feel like my CVS episodes became a nightmare in terms of number and severity during menopause. I started at 48 and I'm now 53 and I feel like my hot flashes and all the other hormonal changes have subsided. I lost a lot of hair. I was misdiagnosed with so many other things including thyroid issues but the thyroid numbers for me always go slightly hypo during flares. I did not take hormones thinking it would worsen...I am better now. 

 

I am a vegan and getting of processed foods was a must for me, but also stopping the meat has helped me a great deal with non CVS hormone stuff relating to menopause. 


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KateSH

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Reply with quote  #13 
I am a vegetarian, not vegan though. I had msjor hair loss and my skin looked like a zombie. I have no idea if it was menopause related or just CVS or what I started drinking collagen stuff, Garden of Life brand, and my hair is getting thick again. It is not vegetarian though, it says "grass fed" on it. I was reluctant to try it because of that, but it seems to make a difference.
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