Xyrem and blood pressure: Another thing to worry about!

[RedHatKat]

The side effects of Xyrem that realdreamer listed for Equinaria really got my attention. the information about high blood pressure troubled me.

Yesterday, when my teeth hurt and my ears felt pressure, I went to CVS looking for one of those store units that take your blood pressure. Instead I bought a wrist blood pressure cuff that 1) takes 3 readings and averages them to make certain the reading is relatively accurate, 2) saves the data, so you can 3) down load it to your computer! It is very cool, can be worn like a HUGE watch and can give you a reading while you are feeling the symptoms and not after you have found someone to take your blood pressure (and your blood pressure has dropped).

Well, I now have more information than I wanted to know. My blood pressure can go from Hypo (low) tension to Hypertension in a few minutes, for now apparent reason, 10 hours after I have my second dose of Xyrem! And my BP can drop just as quickly, for no reason.

I am trying to correlate the signals of high BP with actual BP readings, to see if I am going nuts or really "reading" my body accurately. Today, my blood pressure went from 105/69/55 upon waking at 5 am to 140/102/57 by 8 am, 120/86/55 at 10 am, 145/98/64 at 11 am, 119/70/58 at 3:30 pm, 143/90/61 at 7:50 pm, and 118/81/59 at 8:13 pm!

It's all over the place. Nothing seems to be setting it off. Even if you factor in a high error rate for a machine taking my BP rather than a nurse, it's still a lot of bouncing around. Unfortunately, I don't have Pre-Xyrem data like this to compare these results to.

Every time a nurse takes my BP, it is within my normal BP range. Of course, no nurse has taken my BP while my symptoms are going on.

Anyone else have similar data or experiences? What gives with this?

Normally I have hypotension. All my life I have "eaten" salt -- like a horse. I always assumed I did this because my normal BP is similar to that of a warm corpse. But this up and down is new and feels really strange.

[yawningdog]

I have been posting and posting about this problem, because if you try to find the symptoms of high blood pressure on the net, you are told there are none.

So once again, xyrem users...
headaches, or pressure in your head or face.
teeth aching or feeling like you have had one of them drilled and all of them vibrated.
Shoulder stiffness or pain.
Flushed face like a sunburn that runs down the sides of your neck.
Feeling like you can't think, can't sit still, 'wired and tired' I call it.

The pain you are feeling is not from extremely high blood pressure, it is caused by such a sudden increase in pressure. Mine went from 110/60 to 130/90, still not in the high range but a 50% increase on the diasolic.

This is what I did to help. not a doctor, but everyone here helped with these guidelines.
1000mg of Calcium
500mg of magnesium, on an empty stomach
try for 1000+ of potassium, about 4 bananas or glasses of oj. I finally got a pot. prescription about 1200mg.
get some exercise, it will really help and is the one thing I can't do right now.

Everyone, including the xyrem pharmacy, is telling you this is from the salt in the xyrem. It is not. I stopped my salt intake, which was twice what I was getting from xyrem and it didn't go down, I stopped the xyrem for 4 days and it didn't go down.

The deep sleep we are getting from the xyrem is causing human growth hormones to be released in our brains. In my case, probably for the first time in 20 or 30 years. I'm 42. HGH revs up the pituary and which sets the pace for all the other glands. We are reacting to an overactive, or finally active adrenal gland. I just had my thyroid medicne lowered after it showed up as too high on a blood test I asked for to see my sodium level. BTW, sodium level well into normal.

When I figured this out, it made me feel better about the pain. This was something actually good for my body. It will just take time to adjust to it. I haven't been able to take my vitamins (stomach problems) and I now only have my BP go up on occasions. It is up right now, I can feel the pressure in the top of my head.

Weird thing: My diastolic was high in May, and that I felt in my teeth. My systolic was high in June and that I feel as pressure in the top of my head, and lately my pressure has been okay, but my pusle is up.

My neurologist confirmed my theory with a story about another set of patients. He was treating a whole family with HGH and discovered they all had severe apnea. Once the apnea was treated, he was able to cut down the HGH doses or eliminate them. They were getting their own in their sleep now.

If I could just convince xyrem to stop blaming it on the salt. A lot of people are quiting xyrem over this side effect.

Look Human Growth Hormone, a lot of people are buying the it, there are pages and pages out there on the stuff. As for treating an overdose of HGH, all I have found is to stop taking it. Not really an option for us, since it doesn't go away even when you stop the xyrem.

[Rio]

[yawningdog]

There was something about an increase in glucose tolerance on the HGH pages.

What does GT mean? Do you go hypogylemic, low blood sugar, or you don't have insulin so your blood sugar is too high?

[Rio]

I believe that increased (GT) glucose tolerance would be a good thing. It is the ability of muscles and liver to move glucose out of the blood. So perhaps HGH may help reduce the risk of type II diabetes. To the best of my knowledge (admittedly not my area) glucose intolerance is that you need too much insulin to lower glucose (blood sugar). Generally it is a precursor to type II Diabetes and often presents as hypoglycemia.

This issue has my attention now since there are a couple of medications that were used to treat sleep disorders and/or mental illnesses that have been proven to cause diabetes, pancreatitis and acute pancreatitis (don't quote me). I believe one of those is Zeprexa and there was/is a class action lawsuit.

Btw, I have been told by a very knowledgable PWN that Xyrem is metabolized the same way as sugar. Which makes me wonder about our pancreas' and adult onset type I aka type 1.5 perhaps due to pancreatitis?

Note: many with diabetes have high blood pressure.

Also, I spoke with a Xyrem rep (not as a patient but as a healthcare worker) and she wants us to encourage all patients with side effects to report to Central Pharm. Saying that even 5 with a common side effect will get attention.

[KatNapper]

I always feel the need to chime in on threads about this I havent been online in a few weeks, Ive missed it here!

My BP went crazy when I first started Xyrem too. I think I titrated too high too fast or something, or maybe by doing that it aggravated my BP. Im always on the low end when I get my BP tested. Always. When I was having symptoms yawningdog explained (almost exactly like that for me) I kind of freaked out and went down to 4.5 for my Xyrem doses. I have since leveled out at 5 x2 and my BP seems to have leveled out as well. Even when it spiked I was still within normal, but it wasnt normal for me and it made me feel like crap run over.

I went to the Dr about it and they said because I was still within normal that it was nothing to worry about and they kind of treated me like I was over reacting. I can only rationalize it by thinking that it was just too high for me after living 25+ years with super low BP.

Today its still slightly higher than my average before taking Xyrem, but I think Ive gotten used to it. Its still well within the normal range and Im not dealing with such crappy side effects. I have also started taking Magnesium, Calcium and Potassium vitamins whenever I remember to. That may be helping me as well

[yawningdog]

Gee, you must have gone to my doctor. He had the same reaction.

[DrowsyinUtah]

I had this same problem... What type of potassium and magnesium do you buy?

[DrowsyinUtah]

I purchased Chelate Magnesium
Contains -
Calcium, Iron, Magnesium (as magnesium glycinate and amino acid chelate), and 10 mg of sodium...

Is that the right thing to get?

Also got potassium glycinate with amino acids... any thoughts?

[Geekwench]

[yawningdog]

I should kick myself. I have been feeling miserable. Very tired all day, and absolutely no motivation. I stopped taking my vitamins last summer when another prescription gave me jaundice. I should take my own advice!

[Geekwench]

[Geekwench]