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Thank you for your input. I am curious as to what the treatment is for your family's condition. I have been keeping track of my blood pressures in an effort to find a pattern that will help. I hope it isn't causing part of the problem- anxiety. The pattern I see are two things. The first is that my blood pressures elevate routinely between 2 and 5 in the early morning and evening. I am not overly concerned about those elevations because they are generally not very high (130's to 140's) although they may be significant. The elevations I am more concerned about are when I wake chilling in the middle of the night- those are the highest readings in the high 150's/ 90's, however they rescind quickly to normal. I am wondering what is causing the chilling. Generally, I am not wet from sweating which would make sense to be cold. I will break out into a sweat, not always, but usually after I have finally got warm enough, or too warm. I know that beta blockers make me cold during the day and I have to wear a sweater off and on. So, the treatment may be causing part of my problem.
Another pattern is waking every two hours. I believe this is my usual sleep pattern, but ordinarily I would go back to sleep without knowledge of it. Sometimes, normally I would get up two to three times a night and go to the bathroom and go right back to sleep. (Don't read into this, I believe it is because when I have my feet up, it is easier for my circulation to get rid of excess fluids. This happens in the daytime as well, if I put my feet up for any length of time.)
The other concern is when I have one of my episodes causing an adrenaline- like surge making my heart pound. These generally happen early in the night before the Atenolol is fully on board and I get up and walk off the episode and go back to sleep. My blood pressure is always elevated. I would normally take the Atenolol earlier so that it would be on board when I go to sleep, but then it will not last the entire night. Possible medication duration problem or timing problem.
When I was on the alpha beta blocker combination, my blood pressures were gradually getting lower in the 2-5 am range, so adding another blood pressure medication might help (One that doesn't make me a zombie).
The one interesting thing that you mentioned, and I agree, is that I don't know what my blood pressures would be normally to everyday stressors. It stands to reason it would normally go up and down based on what you are doing, from picking things up on the floor to having a heated telephone conversation, etc. So, I may be wrong, but I'm guessing the important thing here would be if my body can auto-correct the spikes. Am I just catching the blood pressures up because I am checking them so often? Shouldn't your body correct these normal everyday elevations before they can be monitored? Or are the spikes not normal, but are still going down eventually?
I suppose I would need to see what my blood pressure does to stressful situations. For example, I just had a heated conversation on the telephone with my husband about my eldest son, and afterward, I checked my blood pressure for curiosity sake and it was only 127/81! My Atenolol is due within an hour or so. Maybe getting upset and yelling into the phone is therapeutic, or anxiety may not be the only factor here.
I have tried relaxation techniques to see if I can affect my blood pressure. I take my blood pressure just as I sit down and record it. Then, I take deep breaths and relax and make it a game to see if I can lower it, and sure enough, it usually does go down within as little as 3 minutes. I know, I know, it seems as if I am obsessing on my blood pressure, and at one point I would say that is true. But, as a nurse it is quite interesting to see the link between the mind and body. And, I WANT TO GET BETTER AND GET ON WITH MY LIFE! So, anything that I can do to get clues that could help my doctors find out what is happening to me, all the better.
Another concern was my stomach. If my body fights against itself in response to illness and stress, then it is most likely going against itself in the form of GERD (gastroesophageal reflux disease) and IBS (Irritable bowel syndrome) as well as Lupus. It is interesting to note that Fibromyalgia patients also generally suffer from these ailments as well. So, it stands to reason that my stomach and intestines are suffering from these stress hormones and my body's reaction to them. (?) I am happy to report that I have been able to eat better recently, but I continue with loss of appetite and constipation. I don't think that subjecting myself to the stress and irritability of having a bowel prep and colonoscopy is the right thing to do right now, so I will cancel my GI appointment. I'm thinking of starting a trial of Miralax as recommended by my Gastro doc.
I tried taking my usual small amount of Ativan last night and it had the opposite effect. I think it did that one other night as well. It actually kept me awake and made me irritable/ anxious. I read some where that it had that potential. Definite need of medication change. I wanted to start with small amounts and see how I responded to the medication, and if it helped I would slowly increase it until I got the desired effect. Glad I tried it that way.
You may think that I am over analyzing this, but until they find out what's causing this, or even if they never do, I need to find some way to live with it until then. I'm also hoping that in finding out what works, it may help them determine what the cause is. It may be that they never find out a cause, just like my stroke. And I may have to live with that. I'm hoping that it will eventually go away, just like my Fibromyalgia and Lupus has gone into a quiessant state, just like my GERD and IBS get better.
But, if I have learned anything from this, I know it is to try to change the way I react and deal with stress so that I don't bring it on to myself. I can blame my husband and family for bringing their stressors to me, but I need to learn a way to deflect them. Anyone know how to do that? Maybe a book recommendation? I have been reading my books on Fibromyalgia and they have quite a few sections on stress.
I also have a hyperstartle reflex to noise. I had that when I was sleep deprived when I had young babies and also when I developed Fibromyalgia. But, curiously, I started having the startle- thing before this got so bad and I thought I was sleeping just fine.
It is also curious that I can not cry. I can be moved close to tears, but haven't been able to drip cry with tears in I don't know how long. I thought it might be due to my stroke or when I was on Lexapro, but I really don't know. Strange.
As always I appreciate your thoughts... Nan

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