WHY "low and slow" for Xyrem?

[yawningdog]

Oh, I forgot about the anxiety.

back to BP, if you are like me, your BP is not just up. That you would just get used to. That is what drove me crazy when I was trying to figure out what was happening to me. Google High Blood Pressure and you get that it has no symptoms. What was happening to me was a spike of about 50% (100/60 to 130/90) in a matter of seconds lasting a few minutes or sometimes hours. Getting exciting, having any type of stimulant, caffeine or even salt would cause it to shoot up. Get yourself a bp cuff, I got a cheap one at WalMart. Test when you feel like yourself and whenever you start to feel pressure in your head or face, I also became unnaturally aware of my teeth or my teeth would ache.

About the anxiety, not my theory but, it makes sense. Serotonin and Melatonin are made of the same building block B3, Niacin. With the dramatic change in our sleep architecture, we are making more melatonin than usual, causing a shortage of Serotonin. For me, taking a B Complex really helped. I try to take one everyday but I am lousy at it. So when I finally realize that I am more than normally tensed up, I just take one then. I got this advice from this board and was total shocked at how well it worked. Also surprised at how really bad I had let it get. Didn't realize how bad I felt until I started to feel normal again. This can crop up no matter how long you have been on xyrem.

[Geekwench]

understood.

[Geekwench]

Thank you for your response- it is quite helpful and I appreciate it.

[Geekwench]

N/A

[Geekwench]

Yawningdog, something you wrote got me thinking and I wanted to check to see if this might be a possibility in your case.

Over the past couple of years, I was experiencing increasingly worse palpitations, BP fluctuations and tachycardia (rapid heart rate). I was also finding myself short of breath after the simplest of activities, such as walking up subway stairs- by the time I got to street level, I'd literally be panting.

I went to my internist several times. The first time, I thought I was having panic attacks (it was an extremely stressful time in my life [while I've never had the stress of being a VP of a web site, being a VP at Fortune 25 company can be remarkably stressful, particularly when you're responsible for protecting trillions of dollars' worth of transactions]), so she gave me a prescription for Klonopin, which didn't help (although when taken with an Ambien, it actually enabled me to sleep, but that's a different story).

After my sleep study, at my first appointment with my sleep doc, he commented on my palpitations, and since they continued to get worse, I went to my internist again. She ran thyroid tests every time I came in (because every doctor who sees me assumes I'm hyper-t because I'm thin and have buggy eyes- but I'm not hyper-t). Then, last fall, she ran an anemia panel. I had already started taking iron supplements at that point because a neurologist friend of mine had responded to my description of my symptoms with, "sounds like an anemic woman to me" and a light bulb came on for me since I've been anemic in the past. In any case, my iron/ferritin values came in at the very bottom of the normal range, which my internist said was probably due to my having already started iron supplementation and that I'd likely been clinically anemic. She still sent me for an ECG and stress test and I had to wear a Holter monitor for a day. It showed that my heart rate ranged from 57 bpm to 157 bpm in a single 24-hour period during which I didn't do anything strenuous, but apparently my heart beat *well* at whatever speed it was beating, so I got an all clear on the heart stuff.

In any case, I've now been taking iron supplements for several months, and not only has my heartrate returned to its normal 60-80 bpm (for the most part; there are still episodes of tachycardia), but my blood pressure has also normalized. Before, it would range from 90/55 (I kid you not) to 165/120 (again, I kid you not). Now it's back to my "normal" range, which is anywhere from 100/70 to 120/80.

One of the other things I noticed over the past couple of years was that my TSH was rising steadily with each round of bloodwork (it went from 1.3 to 2.4). I've not yet had follow-up bloodwork since starting the iron, but I feel as though my metabolism has returned to normal and I'm suspecting that my values will be back to what they were a couple of years ago the next time I'm tested. I could be wrong, of course, but there are just differences that I've noticed that would be explained by my TSH levels dropping back to my "usual" levels.

So anyway, what I'm wondering is this- since thyroid problems and anemia can have similar side effects, and given that you're already being treated for thyroid issues, have you also been checked for anemia? The reason I am wondering is because when I was having the worst palpitations and BP spikes was when I was "most anemic", and they were exactly the way you describe yours. Additionally, there is a significant block of the medical community that believes there is a connection between anemia and hyper/hypothyroidism.

MIght be worth checking, perhaps. It may not be the Xyrem (or the sodium in it) that is spking your BP- if you're anemic and have thyroid issues, you may be more *sensitive* to the sodium content- I know that a salty meal would immediately spike my BP when I was anemic.

Just a thought.

[Geekwench]

[yawningdog]

I am bad about taking my vitamins and I have an ongoing stomach problem that makes me think that I don't get enough nurtients out of food, so anemia is a real possibility.

I just had a saliva hormone test and mine are out of whack, so I think that might be part of my feeling the effects of xyrem well into the morning. I called Jazz with that info, my cortisol is very high in the morning and got pretty much the same reaction as when I called with the lingering effects in the morning = "Gee, we never heard of that." My doc is also suggestig B5 for me in the afternoon to help with the cortisol, which is low in the afternoon and evening.

Two suggestions to take my vitamins in 24 hours, I think I have gotten the message. I am going to give my husband permission to nag me about them, thanks.

[tree by the stream]

[Geekwench]

[tree by the stream]

Geekwench, Thank you for the detailed information! I have to go back for labs this month, and I will request the iron that you mentioned. It would be lovely if that was the cause, and I assumed the tests I mentioned was for iron. Thanks for the clairification and the details on the one you use that gets absorbed and causes less side effects!

About the B-6. From what I read on this, you don't want to take this daily for long term. The upper tolerable amount from all sources should be 100, IIRC. I know with my coenzymed B complex, that the added P-5-P makes my supplement usage alone at 80 mg/day. I did take some daily for a few weeks, then decided to supplement only a few times a week. Having either a low amount, or a high amount can cause nerve issues. Apparently there are some people who have nerve issues at a lower dosage and that is one of the reasons there is a warning against using so much of it on a daily basis.

That is interesting abour your first sleep being so short. I think if it were me, I would only take the curcumin in the mornings if it had this effect on me! I have read some other good things about this since it was first mentioned.

(edited concerning the folate. You are taking a multi-vitamin, so it probably has this covered. Also, many cereals have folate added. I actually think too much folic acid in the unconverted form is not good. ) I had previously said: Assuming you do not have a MTHFR mutation (or only having a mild one), then make sure you are getting plenty of folate. I prefer the converted kind. Studies show that too little folate can cause an increase in cancer, but if an existing cancer already exists, then too much folate can cause it to grow faster. But these studies were done with folate, and not metafolin (so using the converted folate might, or might not, have a difference result). Assuming no cancer, then better to make sure this is also included well in the diet with the large amounts of B12. (edited out the amounts previously listed as they were for another health issue).

Are you able to get the Hydroxycobalamin without going thru a compounding pharmacy? I have found it difficult to locate.

[Geekwench]

[tashabent]

I believe strongly the potassium and magnesium are key......and if taken in the beginning alot more folk would stick with it, not give up out of misery like I did the first time......I was so miserable below 3....and without supplements....other things that help me with it are a lot of water ecspecially in the evening and a prenatal vitamin......the med is slowly becoming heavenly but I feel low and slow has it's benefits, but I was way to miserable I mean astronomically miserable...which is why I quit....fibro and insomnia and then you add dizzy diarhea cant sleep or take anything else to sleep and the shakes....oh the bp was out of control and the heart palpitations.....all, except the bp went away with the supplements the bp goes up at times but I am really watchful and have water pills for swelling.....

[Geekwench]

[tashabent]

not unless your salt sensitive otherwise it should be called low slow and miserable...oh let me add sleep less....