# NCS/Sleep Program Update



## M&M (Jan 20, 2002)

Susan, I thought this might be of interest to you as a fellow Neurocardiogenic Syncope sufferer. I had gone off my BetaBlocker, because the sleep specialist said it was aggrevating my insomnia, and causing Sleep Paralysis (a particular type of nightmare). Going off it has helped my sleep, but has made my NCS/NMH much worse. So, I am going back on a half dose (I was taking 25 mg, and will now be taking a half pill) daily, and a double dose of Elavil every night. (I have been taking 10 mg, will up it to 20) All of this in hopes of controlling my blood pressure enough, and trying not to make my insomnia worse. Anyway, it has been proof positive for me that while the BetaBlocker does not prevent my fainting spells, it definitely HELPS them not be as often, or as bad.


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## moldie (Sep 25, 1999)

Thanks for the update MrsM. Getting the right balance to make it work sometimes can sure be frustrating.M


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## Susan Purry (Nov 6, 2001)

Hi MrsM, how are you doing on the half-dose beta blocker? The sleep paralysis is a real so-and-so, isn't it!!! I've had it most of my life, but it got so bad (and accompanied by hypnagogic hallucinations and some mild cataplexy) when I was taking Remeron (a tetracyclic antidepressant). I can't remember, but I'm sure I've asked you this at least once before (please humour me and forgive my silly memory), have you talked to your cardiologist about slow sodium supplementation and/or fludrocortisone? Have you had a 24 hour urinary sodium analysis? Best wishes to you,


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## M&M (Jan 20, 2002)

Hi Susan,Wow, I'm glad to know someone else gets the sleep paralysis. It is truly frightening! I'm fortunate, I only started having them when I started the Beta Blocker.The half dose of Toprol is not working. But, there are other options, and so I'll just try something else.


> quote:have you talked to your cardiologist about slow sodium supplementation and/or fludrocortisone? Have you had a 24 hour urinary sodium analysis?


Unfortunately, my cardiologist feels that my NCS isn't a big deal. I no longer see him. My Primary Care doctor now deals with my NCS as well as CFIDS and all that. I've never had a urinary sodium analysis. But, all the things you've mentioned I will remember to ask my PC doctor about! I'm glad you know a few other suggestions to try. I'd like to try to get them under control, and still be able to sleep.How is your Blood Pressure lately? What treatments are you on currently?(Don't feel bad for not remembering, I'm sure I've asked you what treatments you're on before too, but can't remember for the life of me!)


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## Susan Purry (Nov 6, 2001)

MrsM, it would be worth asking your Primary Care doctor about the 24 hour urinary sodium analysis.Mine showed that I have a slightly higher than normal excretion of sodium (i.e. more sodium in my urine than there should be). This could be due to 
not eating much salt
eating an ok amount of salt, but drinking too much water
eating enough salt, drinking the right amount of water, but the kidneys excreting too much salt
Either way, it means that my blood volume is not being maintained at an adequate level, because when we retain sodium, we retain water, which helps maintain the volume of plasma in the blood. And an ok blood volume helps to maintain an ok blood pressure (although of course with NMH there are still the drops in BP in response to posture, heat etc). So, I supplement with slow-release sodium (1800mg twice a day) and on my doctor's advice have restricted my water intake to only 1.5 litres a day. It really does help me - not enough, but significantly. I notice a difference particularly in hot weather. This week the NMH is a problem as I have my period - does yours get worse with your period? If I remember correctly, some studies have shown that sodium supplementation is not particularly effective in treating NMH in CFS patients. The same results with Florinef/fludrocortisone (a corticosteroid which reduces the excretion of sodium by the kidneys). But combined, apparently they seem to work much better. I've not discussed fludrocortisone with my GP though.


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## M&M (Jan 20, 2002)

Thanks for the information Susan. It all makes sense. It's kind of a complicated problem to try to solve, isn't it?And yes, mine definitely gets worse during my period. My symptoms of everything get worse. I've talked to my OB/GYN about going on continuous birth control to help, but again, he doesn't think my problems are serious to warrant that. It is sure hard to find good doctors anymore. I'm glad your therapy is helping, even if it's only a little. Thanks again for all the information and suggestions!


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## M&M (Jan 20, 2002)

Susan,Just letting you know I've been on my new Beta Blocker for almost 2 weeks. It's called Innopran XL and I take an 80mg dose every night before bed. So far, it does not seem to aggrevate my insomnia, and it seems to help (at least a little) with my blood pressure. I am now down to about 1 or 2 fainting spells a week, instead of everyday.


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## Susan Purry (Nov 6, 2001)

Hi MrsM. I wonder if you had a female OB/GYN you might get more luck?!! Even with training and lots of professional experience, how can a male doctor possibly understand how bad things can get with our cycles?! Recently I've made a decision to not make any appointments or do anything much during the week of my period; it's just too much to handle what with the fainting, the aggravated IBS etc. I've given up trying to carry on like normal through that week and feel better for making that decision. My GP gets pretty bad PMT so when I went to her to say I was going through living hell and couldn't cope without Dianette (androgen-blocking birth control pills, which I really shouldn't still be taking after all these years) she right away said 'right, we can't be having that, I know how bad it can be!'. I'm v. lucky with her. That's good news about the new beta-blocker not aggravating the insomnia so far. I hope it continues that way. I really feel for you with the fainting. Best wishes,


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