My cardio thinks I have microvascular angina- need some feedback!!!

[Gingergrrl]

@zzz Sorry for my delayed response here and please do not worry about trying to answer. I just wanted to thank you again for all the great feedback and give an update.

By "episode" here, I assume you mean the pain in your chest.

It is not so much "pain" (even though I might have used that word) as a squeezing tightness in my chest combined with shortness of breath as if I had run up several flights of stairs.

Yes, it is. During PEM, your whole body is working less efficiently, and it takes more energy to get anything done. More energy means more stress on the heart. If you actually try to do something during PEM, the stress on the heart just increases. For this reason, the threshold of activity for triggering an episode of angina is lower during PEM than otherwise.

Thank you and that makes total sense. I think these episodes are part of PEM for me or at least PEM makes them worse.

Hopefully, she will see that the importance of maintaining your weight overrides the importance of your dietary restrictions. Your body is in a major battle with EBV, you have full-blown ME/CFS, and you have the entire range of autonomic issues that are draining your energy. You need to keep your body well fueled with a decent energy reserve. Your diet has to support that. It's important to remember that your naturopath is not a CFS expert, and may not recognize the true effect that your diet is having on your health.

I have a phone consult with her on Weds and am going to discuss my weight loss and diet issues as I have been following her food plan since June. It was based on the results of my food sensitivity testing to try to reduce inflammation so I totally understand why she did it. She's helped me in many ways (and was the first person to suggest testing for re-activation of EBV before I even knew about PR) but I've had some differences of opinion with her, too, and have decided if this phone consult is not productive, I will not be continuing with her.

When you described your illness to me in detail earlier, you described a number of stages that you went through before you came to OMI. It would seem logical that the microvascular angina was just an extension of the existing symptoms. But how are they linked? Yesterday, I tentatively proposed that the microvascular angina was another manifestation of your dysautonomia, and Dr. K appeared to be proposing something similar, undoubtedly for the same reason I was - the idea that you would have two similar cardiac conditions from completely different causes just sounded terribly unlikely.

You know, I really tend to agree with you and not just because I so desperately do not want to have two separate cardiac conditions but also b/c from a purely logical and statistical perspective, it seems they have to be related. Dr. K felt there was a good chance it is all autonomic from the EBV and that b/c my BP and blood volume are low, when I exert myself, there is not enough blood to perfuse the small vessels of the heart which leads to angina episodes but for a different reason than having random micro vascular angina without dysautonomia and ME/CFS. I really hope he turns out to be right.

So I Googled "magnesium angina" and got a huge number of valid hits. It turns out that for the type of angina you have, a magnesium deficiency can actually trigger episodes that would otherwise not happen, and in many cases, a magnesium deficiency can be responsible for all episodes of angina. And a magnesium deficiency is trivial to fix. That's the good news.

My cardio wants me to take 400 mg of Mag per day but feels that the pill form is fine. My CFS doctor is concerned that Magnesium could further lower my BP (although he certainly did not tell me not to take it.) I have been taking a Mag supplement but am in the process of finding another that does not contain a whole bunch of other ingredients like mine does. I felt too ill to really pursue it today but am going to read everything you sent me re: the different ways to administer Magnesium. I plan to continue taking it and just need to find the right form.

Based on what we discussed before, magnesium injections given daily (at least in the beginning) would seem to be appropriate for you, and should improve all your cardiovascular problems.

I would love to try this but so far cannot find any doctor willing to prescribe them to me.

Take magnesium by nebulizer. It's easy, it's cheap, it's safe, it's effective, and no prescription is required. I gave you the details before; if you'd like them again, just let me know. But it would be good to start as soon as possible, for obvious reasons. In the mean time, I think that the nitroglycerin will work if you need it.

I am going to read everything you sent me and am interested in trying this since it does not need a prescription. So far, I have not needed to try the Nitro but I have not done any exertion for days.

My HR was 140 bpm as soon as I stood up from bed this morning and I knew it was not going to be a good day. For whatever reason, the Midodrine makes me incredibly sedated, more than any sleeping pill I have ever tried. You are not supposed to lie down for two hours after taking it which is torture for me. I waited two hours and then fell asleep for three hours. If Midodrine is supposed to keep you upright, it is not working for me.

I also suspect our BP machine is malfunctioning b/c it was giving readings all over the map today for both me and my husband. In the span of a few minutes I had readings with systolic ranging from low 90's up to 148 and diastolic ranging from 46 to 110. I also had a number of error readings. I think we need to buy a new BP machine and now I don't know what my real BP is but suspect it is still quite low.

From what I read on Midodrine, a potential side effect is low HR, not high HR, so I think my POTS reaction this morning was un-related as it has happened a million times before I ever tried Midodrine.

So good luck with everything, and I really think that this is going to turn out just fine for you.

I hope so and wish I could be as positive as you! I felt pretty hopeless today and am so incredibly functionally impaired.

 

[Gingergrrl]

Just wanted to update that today I got awoken from sleep around 6:30 am with my HR at 164 bpm. This is the first symptom I had in Jan 2013 (nine months after mono at that time) which started the whole thing.

It is not POTS (this symptom) b/c I am lying flat sleeping when it happens. But I have POTS reactions as well. So now I am back on the half Atenolol every morning. My BP is still low and I can't blame the tachy on Midodrine b/c I have had these episodes for so long before I ever took Midodrine.

The weird thing is that even with my HR at 164, I was not having the angina pain or pressure (just shortness of breath and hands numb- b/c the blood is trying to go back to my heart.)

To me this is pure autonomic dysfunction b/c it is happening in my sleep and not b/c of exertion. It doesn't scare me like it used to (and hasn't happened in many months) so I don't know why it is back?

(I guess that about covers it.)

 

[xchocoholic]

Hugs. How frightening. The only time I'd see my hr that high was if there were a stranger standing over me with a knife.

I hope you get some answers soon. You're certainly narrowing it down.

Tc .. x

 

[jimells]

Just wanted to update that today I got awoken from sleep around 6:30 am with my HR at 164 bpm.

Yikes! That would freak me out, for sure. Did your heart rate come down soon after you woke up? I wonder if nightmares can exacerbate these kind of problems. I've had periods of time where I experienced bad nightmares, and I vaguely recall that my pulse would be elevated, but surely not to the extremes you are experiencing.

 

[Gingergrrl]

@xchocoholic I don't even think my HR would go that high if someone was standing over me with a knife and when this happens, it is purely autonomic. My highest one ever was 177 bpm about a year and a half ago.

@jimells It always happens during REM sleep but it has nothing to do with nightmares and I could be dreaming about absolutely anything when it wakes me up. When this started in Jan 2013, I still felt okay in between the tachy episodes and continued to work full time for ten more months.

My cardio at the time felt it was connected to having mono the prior year but had no idea how to stop it except with beta blockers. Every time I stop or reduce the BB, this comes back.

I have many other symptoms of ME/CFS but this is truly one of the worst b/c it wakes me up from sleep and I am confused and disoriented as to what is happening. Within minutes my HR returns to normal and it is never sustained. But it takes hours to recover to feeling normal (actually I don't really know what normal is any more!)

 

[jimells]

Within minutes my HR returns to normal and it is never sustained.

It's interesting that your HR returns to normal so quickly. I frequently wake up in early AM feeling very hot. It's always that time of day, the same time of day that the migraines usually start. After a few minutes the hot flash fades away. The migraines, not so much.

I wonder what triggers the Autonomic nervous system to go berserk in the early morning, even before the stress of waking up/getting up.

 

[zzz]

Just wanted to update that today I got awoken from sleep around 6:30 am with my HR at 164 bpm. This is the first symptom I had in Jan 2013 (nine months after mono at that time) which started the whole thing.

Sorry to hear you're having even more troubles, @Gingergrrl! It's very possible that your body still has not recovered from those angina episodes, and so is especially sensitive.

It is not POTS (this symptom) b/c I am lying flat sleeping when it happens.

Actually, it is POTS - symptoms of POTS can happen even when you're lying down. From "Difficulty Sleeping" under "Other Symptoms" on the POTS UK Web site:

Patients can complain of difficulty getting to sleep, waking suddenly with a racing heart and feeling wide awake or sleeping for hours and still feeling unrefreshed when they wake.

As for the cause...

To me this is pure autonomic dysfunction...

Being POTS, that's definitely what it is.

...so I don't know why it is back?

I think the stress of the last few weeks, along with your recent reduction in medication, would be an adequate explanation.

Every time I stop or reduce the BB, this comes back.

That makes sense, as the beta blockers are helping to keep the autonomic nervous system stable.

I have many other symptoms of ME/CFS but this is truly one of the worst b/c it wakes me up from sleep and I am confused and disoriented as to what is happening. Within minutes my HR returns to normal and it is never sustained. But it takes hours to recover to feeling normal.

Yes, this is unfortunately typical of this particular symptom.

(actually I don't really know what normal is any more!)

I know that feeling well. Fortunately, it's fixable. As you rest up and get back on your full medications, I would expect this problem to subside.

This is also another area where proper magnesium supplementation should help significantly. Although I do not have POTS, I used to wake up wired in the middle of the night and couldn't get back to sleep - this was definitely a symptom of my dysautonomia. It went away when I went on the nebulized magnesium.

 

[Gingergrrl]

@zzz Just realized I never responded to this post and wanted to now even though it is a bit delayed!

Actually, it is POTS - symptoms of POTS can happen even when you're lying down. From "Difficulty Sleeping" under "Other Symptoms" on the POTS UK Web site:

Thanks, I looked at that website and did not realize that POTS could occur lying flat or during sleep, and it was interesting to read.

That makes sense, as the beta blockers are helping to keep the autonomic nervous system stable.

I realized that with the low dose beta blocker, I do not have the tachycardia episodes (either true POTS or IST episodes) and I am now religiously taking it every night. Every time I convince myself that I can stop the beta blocker, the tachycardia comes back. So for now, I just accept that I need it along with all the other meds.

This is also another area where proper magnesium supplementation should help significantly. Although I do not have POTS, I used to wake up wired in the middle of the night and couldn't get back to sleep - this was definitely a symptom of my dysautonomia. It went away when I went on the nebulized magnesium.

I know I told you this already but wanted to post for others, that I will be starting the nebulized magnesium as soon as all the supplies arrive, hopefully by the end of the week. I am really excited to see if it makes a difference as far as my angina type episodes of chest tightness and shortness of breath. If it does, I will definitely be posting about it! Thank you again for letting me know about this unique way to get magnesium into the cells.

 

[Gingergrrl]

I have my follow-up appt this morning with my cardio and had planned to ask him about all the things I've talked about in a few different threads- the IV saline, Midodrine, the weird finding on the EKG, his discussion with my CFS doctor
(which led to possible change of my diagnosis from miscrovascular angina to angina type episodes due to low BP and low blood volume as part of the ME/CFS, etc.)

However, now I am worried if I will even make it to the appt as my daughter's school bus never arrived (not her fault!!!) so my husband has to drive her both ways, then take our dog out and then drive me to the cardio which is quite a distance to where we live. I have been using the wheelchair all week which has been incredibly helpful but was trying to figure out if there was a way I could take my dog out myself. When I was healthy and single I used to walk my dog for hours or pick her up, put her in the car, and drop her off at doggie daycare while I went to work an 8 hr day.

If we had a house with a yard, it would be easy but we don't and the distance to get her down the elevator through the garage to the outside and back is more than I am able to walk right now. My husband said not to do it so I am not but I feel so frustrated with myself b/c it puts more work on him AND I may be late for this cardio appt that I have waited a month to be able to see the doctor and ask these questions. I am hoping he is running late himself or there will be no traffic on the freeways and some how we still make it.

I just had to vent b/c I used to be able to do anything that I needed completely independently and did not require help from anyone. If I don't make it to this appt, I won't know whether to keep my saline appt tomorrow and this was my most important appt of everything I have. If the appt were local, I could drive myself but it is fairly far away and the parking lot at the appt is also too far for me to walk. I hate to even say this, but I feel so jealous of people who are able to walk and breathe normally at the same time. They do not appreciate it and take it for granted, as I did all my life before getting ill. I never gave it a thought or appreciated how good I had it until it was taken away.

 

[Gingergrrl]

We did make it to the appt, thanks to minimal traffic and valet parking, but it was a crazy & stressful morning .

I am tagging @zzz to get his feedback (only when you have the time and energy of course!!!) and would love to hear any thoughts on my new plan from zzz and everyone.

1) First I asked my cardio about the "Short PR interval" on the EKG's in the hospital and he said that they are totally normal and what is considered a variant (within normal) on a bell curve. They are only of concern if there are other issues along with them on the EKG which I do not have. I had Googled "Short PR interval" and scared the hell out of myself when I found Wolff Parkinson White syndrome but he said I absolutely 100% do not have this and most likely had a short PR interval my whole life. He said it has nothing to do with ME/CFS or dysautonomia.

2) We talked about his call w/my CFS Dr and he said it was extremely helpful. He seemed to have a better understanding today that ALL of my cardiac & autonomic symptoms started after I had mono in 2012. I asked him about his tentative diagnosis last time of microvascular angina and he said it was still "Undetermined" (vs. angina type episodes from low BP and low blood volume as part of ME/CFS.) I told him that I never tried the nitroglycerin spray b/c the instructions said if your BP ever drops below the 90's over 60's (which mine can) then NOT to take it as it could be dangerous. He understood but said if I have a severe episode, I should take it and then lie down which I agreed to. So this diagnosis is still to be determined...

3) We talked about Midodrine and how the 5 mg pill makes me incredibly sedated but with the 2.5 mg pill, less so and most of the time, I can tolerate it and it does raise my BP. He said he has had other patients who got sedated from it (which made me feel less like a freak of nature!) He wanted me to try Droxidopa which I will type about shortly.

4) We talked a lot about IV saline and how the first one was so helpful like a miracle cure but the second was awful with no benefit and several bad side effects. I asked if it was normal 0.9% saline and he said yes. He didn't think the one liter was too much fluid over 3 hrs (which I didn't either!) and he said they use alcohol and not chlorhexadine (which zzz had asked me about in my saline thread.) He said the flush is saline with a tiny amount of heparin but he did not think it would cause any reaction. He felt I should try IV saline again and I agreed.

5) To backtrack to the Droxidopa (called "Northera"), he said that even though it is an alpha 1 agonist like Midodrine, it is a totally different mechanism and thought it would be better for me. Initially I said I'd try it but then the nurse came in and said I was 10th on a waiting list to receive it and that it was only FDA approved three weeks ago! The nurse had a huge packet of consent forms and said that I'd need to take the first pill at the office and stay for several hours in case I had a bad reaction .

This made me hesitant but the kicker was that I would have to follow the exact dosing schedule in the packet which starts with 100 mg 3x/day and over the course of 1-2 wks increases to 600 mg 3x/day. I told the nurse that I already knew there was no way my body would tolerate such a high dose and why couldn't I try just one pill 1x/day at first to see how I react? He said that it is not possible with this protocol. It turns out that most insurance companies will not pay for this new med, and the co-pay is thousands of dollars, and you cannot just get them at a regular pharmacy!

At that point, I knew it was not for me so I did not sign the forms. When my cardio came back into the room, I thought he might be mad but he actually totally understood. He said he knows I am super sensitive to meds that and it is smart for me to wait a few months (since he has never prescribed it before!!!) and then he will have a better idea of how it works. He felt it was totally safe but it is so new, that there is not a lot of data yet in the U.S. I did not want to be a guinea pig for a new med so we decided to stick with Midodrine for now.

6) I told him about my low vasopressin test and that my other Dr had suggested desmopressin. He felt this was a bad idea and a completely different course of treatment for DI (which I do not have.) He felt we should stick with increasing fluids and the saline IV's so we were on the same page. I wanted to understand why my vasopressin was so low but there was no time to address this.

7) Last, I told him that I was going to try the magnesium nebulizer and he said he had never heard of this and that I should do magnesium IV's once a week with the saline instead. So he re-wrote the prescription for 4 grams of Mag Sulphate in one liter of normal saline 1x/wk. If I tolerate it the saline, I can do a second IV saline per week (but without the Mag.) So @zzz, I wanted to ask you, is IV Mag 1x/wk as good or better than the nebulizer route?

Lastly, he mentioned ideas that we could try in the future (besides Droxidopa) but said they are way into the future and hopefully I will not ever need them. I have not researched them yet but one is a med called "Ranexa" (which I doubt I would ever try) and the other is albumin IV's. If this involves a blood transfusion, then I also will not be trying it.

Thanks to anyone who is still awake and took the time to read all of this!!!

 

[zzz]

We did make it to the appt, thanks to minimal traffic and valet parking...

Excellent! It sounds like it was a very productive appointment.

1) First I asked my cardio about the "Short PR interval" on the EKG's in the hospital and he said that they are totally normal and what is considered a variant (within normal) on a bell curve. They are only of concern if there are other issues along with them on the EKG which I do not have. I had Googled "Short PR interval" and scared the hell out of myself when I found Wolff Parkinson White syndrome but he said I absolutely 100% do not have this and most likely had a short PR interval my whole life. He said it has nothing to do with ME/CFS or dysautonomia.

I agree completely.

2) We talked about his call w/my CFS Dr and he said it was extremely helpful. He seemed to have a better understanding today that ALL of my cardiac & autonomic symptoms started after I had mono in 2012. I asked him about his tentative diagnosis last time of microvascular angina and he said it was still "Undetermined" (vs. angina type episodes from low BP and low blood volume as part of ME/CFS.)

When you look at this from the point of view of autonomic dysfunction, it doesn't matter which of these diagnoses are correct; the underlying cause and the treatments that get at it are the same. In my earlier message to you, I said you could skip Table 1 in the introduction to Betrayal by the Brain, but I think I was a bit premature. I started rereading this book and started looking through Table 1 in depth for the first time. This is the table that describes all the applications of neurosomatic medicine. On page 4, at the top, under "Cardiology", is "microvascular angina".

The end of the sentence on page 3, right before table 1, is especially important. It states:

...and the final diagnosis often depends on the orientation and specialty of the doctor.

That's exactly what's happening here. Dr. C is a cardiologist, so he primarily looks for cardiological explanations. He also looks at autonomic dysfunction, but cardiology is the center of his view. If you remember my first post from the hypervolemia thread, I said the following, which was later backed up by Professor Edwards:

The medical literature states that you essentially get hypervolemia because of three major reasons:

1. Heart failure or other heart-related problems
2. Kidney failure or other kidney-related problems
3. Excess protein in the blood (excess antibodies i.e. immunoglobulins or other e.g. albumin)

They're missing one:

4. Autonomic dysfunction

The same problem that can cause hypovolemia in ME/CFS can also cause hypervolemia. It just involves the malfunction of different neural networks or structures in the brain, or malfunctions of the same.structures (such as the hypothalamus or pituitary), but in different ways.

In other words, what you've got is an ME/CFS problem. Dr. Goldstein would treat this at the root, which he saw being in the brain. He had great success with this approach.

I told him that I never tried the nitroglycerin spray b/c the instructions said if your BP ever drops below the 90's over 60's (which mine can) then NOT to take it as it could be dangerous. He understood but said if I have a severe episode, I should take it and then lie down which I agreed to.

This makes sense; it was my original feeling, but I didn't say anything because I thought that the expertise of someone like Dr. C was needed here.

4) We talked a lot about IV saline and how the first one was so helpful like a miracle cure but the second was awful with no benefit and several bad side effects. I asked if it was normal 0.9% saline and he said yes. He didn't think the one liter was too much fluid over 3 hrs (which I didn't either!) and he said they use alcohol and not chlorhexadine (which zzz had asked me about in my saline thread.)

So far so good...

He said the flush is saline with a tiny amount of heparin but he did not think it would cause any reaction.

Oops! Nobody told us that they were putting heparin in your saline. How many times have you heard the words "It's just a tiny amount." Or, "Most people have no problems at all with Levaquin."

When I read that last statement of yours, heparin immediately became the #1 suspect. As I noted in this post, the reaction you had to the saline infusion is a known reaction, and it indicates hyponatremia, or low sodium levels. (This is also the main negative side effect of desmopressin, so it's good you didn't add that in the mix!) So if heparin were causing the problems, there should be evidence that heparin can cause hyponatremia.

So I Googled "heparin hyponatremia", and got the expected deluge of hits. This appears to be a well known side effect. For example, from the Drugs.com page on heparin side effects:

Metabolic side effects have included hyperkalemia, hyponatremia, and hypertriglyceridemia.

So not only can it cause hyponatremia, but also hyperkalemia (high potassium levels) and hypertriglyceridemia (high triglyceride levels).

And that's only the metabolic side effects. There are many, many other possible side effects.

Now I'm sure that Dr. C knows about these side effects, but he believes that the amount of heparin you're getting in the saline IV is way too low to cause any of them. It's not. For people who are hypersensitive to drugs, like you and me, we should never believe a doctor who says, "That dose is too low to cause the side effect you're experiencing!" I have found such statements to be invariably wrong, and I've heard plenty of them.

Heparin is a blood thinner, and the obvious reason for it to be in your saline IV is to make sure that the saline gets perfused very well everywhere. However, it's not essential. Plenty of saline IVs are done without heparin, and they work fine. In my opinion, you would be best off by insisting that you get a saline IV without the heparin (which is how they're normally packaged). Otherwise, you will most probably have a repeat of your last experience, with your symptoms being either the same or somewhat less or greater than last time. It's hard to say. But it's doubtful that you would get any benefit from the infusion, and you would probably end up feeling worse if you let them put the heparin in.

Without the heparin, the saline should work great.

5) To backtrack to the Droxidopa (called "Northera"), he said that even though it is an alpha 1 agonist like Midodrine, it is a totally different mechanism and thought it would be better for me.

How can it be a totally different mechanism if it's also an alpha(1) agonist? I noted that in the prescribing information for droxidopa, under "Mechanism of Action", the first sentence is the rather standard, "The exact mechanism of action of NORTHERA in the treatment of neurogenic orthostatic hypotension is unknown."

Dr. C probably isn't familiar with the way alpha(1) noradrenergic receptors cause oxytocin to be released; this isn't well known. Droxidopa works simply by being converted to norepinephrine in the body. It will definitely result in the release of oxytocin, just like midodrine. It's possible that the amount of oxytocin released may be greater or smaller, but I would expect it to be basically the same.

One difference between the two drugs is that droxidopa penetrates the blood brain barrier easily, while midodrine penetrates it hardly at all. This means that droxidopa can be converted to norepinephrine in the brain. In general, PWME are low in norepinephrine, but the deficiencies occur only in certain parts of the brain. Other parts of the brain may have too much norepinephrine This drug may actually be good for your ME/CFS, but it may not, and I would certainly start at a lower dose, if you ever do take it.

It turns out that most insurance companies will not pay for this new med, and the co-pay is thousands of dollars, and you cannot just get them at a regular pharmacy!

At that point, I knew it was not for me so I did not sign the forms.

I think that's clearly the right decision.

When my cardio came back into the room, I thought he might be mad but he actually totally understood. He said he knows I am super sensitive to meds that and it is smart for me to wait a few months (since he has never prescribed it before!!!) and then he will have a better idea of how it works. He felt it was totally safe but it is so new, that there is not a lot of data yet in the U.S. I did not want to be a guinea pig for a new med so we decided to stick with Midodrine for now.

Good for him! The midodrine sounds best to me too.

6) I told him about my low vasopressin test and that my other Dr had suggested desmopressin. He felt this was a bad idea and a completely different course of treatment for DI (which I do not have.) He felt we should stick with increasing fluids and the saline IV's so we were on the same page.

That's good; I would have been very surprised to hear him recommend desmopressin for you.

I wanted to understand why my vasopressin was so low but there was no time to address this.

It's all tied up with the dysautonomia in a very complicated package. Dr. K apparently recommended desmopressin because that's the drug you use to raise vasopressin levels when hypovolemia is present. But that's treating that one symptom in isolation, which as Dr. C noted, is a bad idea in this case.

When you fix your dysautonomia problems, your vasopressin levels will be fixed along with them. In the mean time, they're nothing to worry about.

7) Last, I told him that I was going to try the magnesium nebulizer and he said he had never heard of this and that I should do magnesium IV's once a week with the saline instead. So he re-wrote the prescription for 4 grams of Mag Sulphate in one liter of normal saline 1x/wk. If I tolerate it the saline, I can do a second IV saline per week (but without the Mag.) So @zzz, I wanted to ask you, is IV Mag 1x/wk as good or better than the nebulizer route?

It's not as good. Magnesium is necessary for so many things, including many under the realm of cardiology. For your cardiological needs, a once a week IV would be OK. But we're trying to address your entire ME/CFS situation here. There's a good reason that so many CFS experts have recommended magnesium injections (or nebulizer usage) daily; Dr. Cheney even recommends multiple injections per day for some people. The reason is neurological, and outside the bounds of Dr. C's bailiwick. Daily use of the nebulizer is recommended specifically for the effect that it has on the NMDA receptors in the brain. It's a little bit like taking an antibiotic; how well would you expect an antibiotic to work if you took it only once a week? Daily administration of magnesium is important because you need to have your NMDA receptors desensitized, as their hypersensitization is a big problem in ME/CFS. It's one of the reasons you're so sensitive to drugs, among other things. By doing daily magnesium administrations, you hit those receptors with magnesium before the previous dose has completely worn off. This is essential if you're going to get them desensitized enough to make a real difference in your ME/CFS.

 

[CFS_for_19_years]

With respect to treating Mg deficiency, you can take a time-released product like this that will even out some of the peaks and valleys of taking traditional Mg supplements - this is what I take:

Mag-Tab SR is a sustained-release caplet formulation of magnesium L-lactate dihydrate
http://www.magtabsr.com/

A nutritionist told me that our bodies like to take in magnesium in a variety of chemically bonded forms. The above tablets use the lactate form, there are other forms like magnesium citrate, magnesium glycinate, etc. Mg oxide and Mg carbonate are less favored forms. I believe the injectable type of Mg is magnesium sulphate.

 

[Gingergrrl]

Heparin is a blood thinner, and the obvious reason for it to be in your saline IV is to make sure that the saline gets perfused very well everywhere. However, it's not essential. Plenty of saline IVs are done without heparin, and they work fine. In my opinion, you would be best off by insisting that you get a saline IV without the heparin (which is how they're normally packaged). Otherwise, you will most probably have a repeat of your last experience, with your symptoms being either the same or somewhat less or greater than last time. It's hard to say. But it's doubtful that you would get any benefit from the infusion, and you would probably end up feeling worse if you let them put the heparin in.

@zzz I am so sorry and I don't think I was clear in my first post. There is no heparin inside the bag of saline for the IV and it is pure, normal saline. The heparin is only in the "flush" which is a tiny syringe that they use to test the IV line before the infusion and clean it out after the infusion. In hearing that, does it make a difference in what I said? Sorry for the confusion!

It's not as good. Magnesium is necessary for so many things, including many under the realm of cardiology. For your cardiological needs, a once a week IV would be OK. But we're trying to address your entire ME/CFS situation here. There's a good reason that so many CFS experts have recommended magnesium injections (or nebulizer usage) daily; Dr. Cheney even recommends multiple injections per day for some people. The reason is neurological, and outside the bounds of Dr. C's bailiwick. Daily use of the nebulizer is recommended specifically for the effect that it has on the NMDA receptors in the brain. It's a little bit like taking an antibiotic; how well would you expect an antibiotic to work if you took it only once a week? Daily administration of magnesium is important because you need to have your NMDA receptors desensitized, as their hypersensitization is a big problem in ME/CFS. It's one of the reasons you're so sensitive to drugs, among other things. By doing daily magnesium administrations, you hit those receptors with magnesium before the previous dose has completely worn off. This is essential if you're going to get them desensitized enough to make a real difference in your ME/CFS.

Thank you and I did not realize that. You had said that the Magnesium nebulizer helped you with the angina type symptoms (chest pressure and shortness of breath) so I assumed that is why you did it and continue to do it. I did not know about the NMDA receptor stuff and am wanting magnesium in the most urgent sense for the cardiological needs. Do you think the Mag IV will help the cardiological & autonomic issues? If I try it at my appt tomorrow is it in any way dangerous to me? I assume I can still do the nebulizer at a later point as planned.

One difference between the two drugs is that droxidopa penetrates the blood brain barrier easily, while midodrine penetrates it hardly at all. This means that droxidopa can be converted to norepinephrine in the brain. In general, PWME are low in norepinephrine, but the deficiencies occur only in certain parts of the brain. Other parts of the brain may have too much norepinephrine This drug may actually be good for your ME/CFS, but it may not, and I would certainly start at a lower dose, if you ever do take it.

I definitely intend to start at a lower dose if I ever do take it. Do you think Dr. Goldstein would have tried Droxidopa if it has existed back then? I was curious about it but felt pressured to sign the paperwork by the nurse before I understood what I was getting into or had even read the literature. Then when he said the cost, I knew it was out. Plus they had literally never prescribed it before and I don't want to be a medical guinea pig when I have Midodrine as a good option right now. Once they use it for a few months, they will be able to answer some of my questions which they could not answer for me today.

Thank you for all the on-going feedback and please add this to my tab...

 

[Gingergrrl]

@CFS_for_19_years Thank you for the info and I have tried several different types of magnesium supplements in the past including an extended release version (although a different brand than yours.) At present I am taking one called Magnesium Malate Chelate 500 mg per day.

I was looking at other ways of getting Magnesium into the cells and since none of my doctors will prescribe the shot, I learned about the nebulizer from @zzz which is used by Dr. Sarah Myhill in the UK. My doctor offered the IV version today (which I had in the hospital) and was not sure how that compared.

 

[Sidereal]

@Gingergrrl, I've been using a Mg sulfate cream these last couple of months. I have noticed subtle improvements in my overall condition though I can't be sure this is due to the Mg. Transdermal delivery seems more effective than pills which did nothing for me except loose stools. Unfortunately I wasn't able to tolerate Epsom salt baths (these are also Mg sulfate but they made me very sedated & barely able to move my limbs, scary). Oral supplements of various kinds like Mg malate, citrate, glycinate either did nothing or made me feel worse.

 

[Gingergrrl]

@Sidereal what types of symptoms improved with the mag transdermal cream? Do you use a certain brand and amount? I have read about it in other threads but don't remember the details or tried it.

 

[Sidereal]

@Sidereal what types of symptoms improved with the mag transdermal cream? Do you use a certain brand and amount? I have read about it in other threads but don't remember the details or tried it.

Nothing approaching a miracle, just an overall feeling of improved well-being like having a clearer head, being less exhausted going about my (very limited!) daily routine, feeling calmer. It hasn't led to a noticeable improvement in energy or POTS in the sense that my energy envelope is still the same. I use Kirkman Labs which is the only one I was able to find on iHerb though there could be others that I missed. No specific dose, just rub a reasonable amount on my limbs several times a day. It comes with a little scoop.

 

[zzz]

@zzz I am so sorry and I don't think I was clear in my first post. There is no heparin inside the bag of saline for the IV and it is pure, normal saline. The heparin is only in the "flush" which is a tiny syringe that they use to test the IV line before the infusion and clean it out after the infusion. In hearing that, does it make a difference in what I said? Sorry for the confusion!

No need to apologize - you put the word "flush" in there, and I missed it.

So yes, this makes a big difference. It's hard to see how there could possibly be enough heparin left in that line to have any effect at all. Also, when I look at what they use for heparin in a saline flush, it's a very weak form. Some people can't tolerate heparin for various reasons, but the amount used in a flush is so little and it's basically all washed away, so it doesn't bother even these people.

It seems we can rule out the heparin, then. But don't worry, I have another theory! I had actually been thinking that this other theory was the most likely explanation until you mentioned the heparin.

First, I'll get out my handy-dandy blood volume calculator, which calculates the predicted blood volume for a healthy person of a given height, weight, and gender. I'm pretty average, so I would expect to come out close to the average blood volume for a person, which is five liters. So I plug in the numbers, and out comes... 5.04 liters! I don't actually have that much blood, of course. The last time it was measured, I had 3.52 liters.

Now @Gingergrrl, you're quite a bit shorter and lighter than me, so your expected blood volume is going to be correspondingly lower. So we plug in your height weight and gender, and get... 3.42 liters! So your expected blood volume is only about two thirds of mine, which makes sense because you weigh about two thirds as much as I do, and blood volume is roughly proportional to weight.

But that's your predicted healthy blood volume. If, for example, you were down 30%, like me, your actual blood volume would be 2.39 liters. That's not a whole lot of blood - it's less than half of the standard five liters. But five liters would be way too much for you. And even if you were down only 20% in blood volume, which is near the lower end of the range you'd see in someone with your symptoms, that's still only 2.74 liters.

And yet despite our difference in blood volumes, when we go to the infusion center, they give us both one liter of saline. Just like the way they give you the same dosage of pills that they give to me.

Now one liter of saline is a much smaller proportion of total blood volume for me than it is for you. Because you're working with much smaller blood volumes than I am (or than most Americans are), it takes less of a blood loss to make you hypovolemic, and less saline is needed to correct that. But they give you one liter anyway.

So what happens? If your blood volume is still recovered somewhat from the first infusion, which made you feel so good, then you can easily be down half a liter and still be symptomatic. If you then add one liter to that, you have half a liter too much - you're hypervolemic. This results in hyponatremia, and those are exactly the symptoms that you had. This is the most common negative reaction to saline infusions - people just get too much. Over time, your body corrects this, and takes you back to your previous blood level.

I think that this is extremely likely. If you want to test this out, take the one liter saline tomorrow. We don't know what your exact blood volume is now, so it's hard to predict an exact reaction. But I would expect that it would be somewhere between somewhat and very negative. If, on the other hand, in the unlikely event that your blood volume has fallen all the way back to its lowest levels, you might get a very positive reaction, just like the first one.

Using the "start low and go slow" philosophy, I think the best thing to do in your situation would be to take an infusion of half a liter. That should cut the risk of a reaction down to almost nothing, and half a liter is a lot for someone your size. It should make you feel considerably better. The infusion center can do half liter infusions; they have to, in order to be able to treat children.

You had said that the Magnesium nebulizer helped you with the angina type symptoms (chest pressure and shortness of breath) so I assumed that is why you did it and continue to do it. I did not know about the NMDA receptor stuff and am wanting magnesium in the most urgent sense for the cardiological needs.

But the cardiological needs that are causing the angina are all due to autonomic dysfunction, the root of which is in the brain. I had mentioned that my angina was fairly frequent last spring. This means that in the beginning, I often had it when I did my nebulizer treatments. Every time I did a treatment when I had angina, I could feel it ease up. And because I did the treatments daily, there was no time for the angina to get worse again. It was one of those things that we don't see much of around here - a straight line recovery. My angina and dyspnea have been completely gone for months now. It took about three months for them to totally disappear.

If you take the magnesium weekly instead of daily, you'll be treating your angina only weekly instead of daily. That doesn't mean that it will take seven times as long to treat it, though. If you do the treatments only weekly, you give your body a whole week to reset to its former level, and so the angina will take a lot more than seven times as long to treat. Why will your body try to reset to its former level? Because magnesium is far from a total treatment for ME/CFS, and all the parts that aren't being treated will tend to drag the rest along.

Do you think the Mag IV will help the cardiological & autonomic issues?

It should; per treatment, IV is generally considered the most effective way of administering magnesium. Its biggest disadvantage is that you can't do it every day.

If by any chance you decide to cut the saline infusion to half a liter and succeed in doing so, then if they want to shorten the infusion time, be sure that the infusion time is long enough for that amount of magnesium. Don't just take the word of a technician; get a doctor's word for that. Infusing magnesium too fast can be dangerous.

And if you're already taking the magnesium by IV (which sounds quite reasonable), see if they can put some Vitamin C in there. I had that when I had my ganciclovir infusions, and it was enormously helpful. It is one of Dr. Goldstein's top treatments. He describes it in detail on pages 131 to 135 of Betrayal by the Brain. In the last paragraph on page 132, he gives the treatment details, including dosage. He found IV Vitamin C to have many benefits for his patients. It may also help with your EBV.

If I try it at my appt tomorrow is it in any way dangerous to me?

Not as long as they infuse it at a reasonable rate. The three hours is quite sufficient, and less is OK if approved by your doctor.

I assume I can still do the nebulizer at a later point as planned.

There's no reason you can't do that in conjunction with the IV magnesium. If you have working kidneys, the body gets rid of excess magnesium very quickly. So you could either do the nebulizer six days a week and skip the day when you have the IV, or you could even do the nebulizer seven days a week if you like the way the treatment relaxes you before bed.

Do you think Dr. Goldstein would have tried Droxidopa if it has existed back then?

It did exist back then. It has been used in Japan and parts of Asia since 1989. But Dr. Goldstein never mentioned it, at least not in his books.

@Gingergrrl, I've been using a Mg sulfate cream these last couple of months. I have noticed subtle improvements in my overall condition though I can't be sure this is due to the Mg. Transdermal delivery seems more effective than pills which did nothing for me except loose stools. Unfortunately I wasn't able to tolerate Epsom salt baths (these are also Mg sulfate but they made me very sedated & barely able to move my limbs, scary). Oral supplements of various kinds like Mg malate, citrate, glycinate either did nothing or made me feel worse.

Yes, magnesium cream will definitely deliver a lot more magnesium to your body than any of the oral forms. However, due to the slow rate of absorption through the skin, it's still going to deliver a lot less magnesium than the top three treatments - IV, injection, and nebulizer. The benefits you describe from the cream are much like what I have experienced from the nebulizer, except that I have definitely gotten additional energy as well from the treatments, which is common. I also experienced major benefits with my autonomic problems. You say your experience was "Nothing approaching a miracle"; for me, it was near miraculous, as it took me from being almost continually bed bound with severe angina and dyspnea to functioning on a much more normal level, free of all angina and dyspnea symptoms, and able to do much more in general.

 

[Sidereal]

@zzz, agreed. I was just throwing the cream out there as another option for people who are cautious about injecting stuff. The nebuliser is an attractive idea.

I should mention that my condition worsened somewhat initially after starting transdermal MgSO4. At first I thought it was the sulfate component. Then I wondered about potassium. I have terrible K problems to begin with. When I upped my K supplement, the symptoms cleared up. I thought Mg was supposed to help fix intracellular hypokalemia!

 

[zzz]

@zzz, agreed. I was just throwing the cream out there as another option for people who are cautious about injecting stuff. The nebuliser is an attractive idea.

I would highly recommend it. Anyone who's interested can PM me for details.

I should mention that my condition worsened somewhat initially after starting transdermal MgSO4. At first I thought it was the sulfate component. Then I wondered about potassium. I have terrible K problems to begin with. When I upped my K supplement, the symptoms cleared up. I thought Mg was supposed to help fix intracellular hypokalemia!

What you experienced is normal. Magnesium and potassium are closely linked. When you increase your intake of one substantially, you need to increase your intake of the other as well, or else you get deficiency symptoms for the one you don't increase. When I made the nebulizer recommendation to @Gingergrrl, I made sure that she would be taking sufficient potassium supplementation at the same time.