Ah @
Gingergrrl, you manage to cram more into a day than I do into an entire week. And I bet it feels that way, too, even on a "quiet" day.
You write very well, though. You should at least write a book and make some money from all this. You'd help publicize the cause in the process.
@
zzz I just wanted to clarify that I am not having an angiogram or heart biopsy or anything like that and I think my former posts must have been unclear!
No; looking back, your posts were quite clear. But their clarity didn't manage to penetrate my brain fog.
I knew you had mentioned an angiogram on a number of occasions. But when I went back and looked, it was always a CT angiogram! That makes perfect sense, of course, as that's far simpler than a traditional angiogram, and completely noninvasive. But that means that your CFS doctor's request for an endomyocardial biopsy would have required a separate procedure, including catheterization. That would explain why your cardiologist was so opposed to it.
I've seen a couple of references to viruses in the conduction system, but these references were describing how the viruses used the conduction system to get to the heart muscle, where they made their home. I've seen no reports of viruses causing trouble in the conduction system itself.
Viruses are a well known trigger for POTS, which of cause is a type of dysautonomia in which body has trouble controling things like heart and other essential functions.
This is true, but these functions are controlled by the hypothalamus, which would make a viral infection of the brain more likely in such cases. Unfortunately, even once the virus is eradicated, the dysautonomia may remain. At least it can be treated.
My cardio promised me I could take my own meds, I could start with low doses, I would have a chance to ask questions and none of this turned out to be true. He promises anything in the moment but then never confers with the nurses and then they blame me.
I think that part of the problem may be that as your cardiologist is the top cardio doc at the hospital, he often gets called to emergencies, urgent meetings, etc. I would guess that he fully intended to talk with the nurses but that something unexpected came up, and he didn't get a chance.
He was abrupt with me this morning (maybe the nurses said I was a bad patient)
More likely, he had other problems coming up in other areas, and these may have affected his mood. This would also explain why he didn't have much time to talk with you at this point.
I tried to ask questions re: Midodrine b/c I thought it was one option of many but he was adamant that this was the plan and got frustrated with me.
Midodrine was a very reasonable drug to try, and he knew that; that was extremely basic for him. But it sounds like he just didn't have the time to discuss everything with you, especially with something that was so obvious to him.
He had promised to speak with Dr K but now doesn't seem interested.
Now that I understand that you had your angiogram done as part of your CT scan, I can see why he would not want to do that biopsy. He seems to be clearly running short on time here due to his other duties, and I can see why he would think that there wasn't any real point in talking to Dr. K, at least now. It wasn't going to change anything, and he just didn't have the time.
I felt really coerced into taking Midodrine and I know some of you guys take it and are fine but I didn't like feeling coerced. I had such a life altering reaction to Levaquin that it is very hard for me to trust doctors. I feel like I am now labeled as the crazy & difficult CFS patient here and just want to go home.
Levaquin is an unusually toxic drug. Midodrine is rather benign; about the worst reaction you get from it (assuming you take the prescribed dose) is what you experienced. Even the two people known to have taken major overdoses of it were treated and were fine the next day.
But how do you know that? As you found out with Levaquin, you can't trust your doctor to always tell you the side effects, or even to know what they are. (For an example of how a clueless doctor recently may have almost killed a forum member (who fortunately didn't follow her advice), see the thread
Antibiotics: complete the round or stop?)
As I have a lot of drug sensitivities, I found out long ago that the only way to make completely sure that a drug was safe for me was to check it out myself. This also had the advantage that I didn't have to bother the doctors or other medical staff. In the old days, I would just look up the drug in the PDR. These days, I just type the drug name followed by the phrase "prescribing information" into Google. Either the manufacturer of the drug will have a link to the prescribing information, often ending up at a PDF file, or else (especially for older drugs) you'll end up at Drugs.com, which has this information as well. It's important not to get sidetracked by the patient information, as this is incomplete. And if you're asked whether you're a patient or a medical professional, you need to choose "medical professional" - otherwise you'll get the patient info.
I think that this could be helpful for many ME/CFS patients to do. It means learning enough medicine to read the prescribing information, but based on the medical knowledge I see on this forum, that shouldn't be a problem. It also means learning what type of side effects you tend to be sensitive to, and what type you don't. And if you have any questions, then you ask your doctor. But this should save you and him (or her) a lot of time, and make taking new medications a lot less risky.
You can even do this when you have no source of data available. For example, once I ended up in an ER for the second time in a few days with the same case of drug-resistant pneumonia that kept getting worse. When I walked in the door, they took one look at me, put me in a wheelchair, rushed me through admitting, and into a patient room. It's the only time I've seen ER staff look worried. They started getting the IV ready, and I asked what antibiotic they were going to use. They told me the name, and I recognized it as a cephalosporin, but I had never taken a cephalosporin, and I'm very sensitive to antibiotics. So I asked for a PDR.
They looked puzzled for a moment, but then they produced a PDR. I spent a couple of minutes finding the drug and reading its description (which was a little difficult with a fever of 103). It looked quite reasonable, so I closed the book, looked up at them, and said, "OK, let's go!" And we did, and I was fine.
My cardio does not prescribe mag shots or use Taurine. He prefers mag IV's and said I will get another saline/mag IV today and they take 5-6 hours (not sure why?!!!). I am going to ask my ND if she does those shots. It turns out my mag & potassium are really low even though I already supplement with both!
Yes, under the circumstances, going through your naturopath seems the best thing to do. Either that, or asking Dr. K, as @
Sushi suggested. For best results, you should do these shots daily for at least the first few weeks. Then you can try backing off to a few times a week, and see if that's OK, or whether you prefer it on a daily basis.
You could ask Dr. K for a prescription? It isn't an unusual thing for ME/CFS patient to get these shots. I think Dr. Cheney prescribed them routinely for his patients.
Yes; the schedule I mentioned above is what Dr. Cheney used. Drs. Myhill and Enlander also recommend these injections routinely. Dr. Myhill has explained that most people can't get enough magnesium from supplements because magnesium does not penetrate the gut very well. I know that I had a severe magnesium deficiency even while taking a lot of supplements. Magnesium and potassium are linked, so @
Gingergrrl, your low magnesium drags down your potassium levels. Once you start getting magnesium injections, your body will be able to use your supplemental potassium (which it will need).
Dr. Cheney's formula for the injections seems to be the best tolerated (i.e., the most painless) from what I've heard. I've posted it before, but for convenience, I'll post it here again:
Many patients benefit from magnesium injections, which are virtually painless with the addition of taurine. The Magnesium used by most is Magnesium Sulfate—standard 50% solution—1/2 cc drawn into the syringe first, followed by 1 1/2 cc's of Taurine. The Taurine is compounded at 50 mg/cc. The taurine makes the injection virtually painless and the ratio eliminates the hard knots many are familiar with. The injection is intramuscular, given in upper, outer quadrant of either buttock. Both require scripts from a doctor.
Dr. Myhill mentions that you can also give yourself this injection subQ, generally in the abdominal area, or the side of your thigh. If you do, it's important to massage the injection site afterwards a bit so that the solution gets distributed around somewhat.
I also got agitated from the ACTH stuff that they injected into my IV although not to the level of the over methylation incident. My body just does not process things well that normal adults can process.
Low to moderate side effects from this injection are common.
I definitely have tons of trauma from past physicians which clouds my current interactions (as I know everyone on this board has, too.). My cardio came back and took my hand and said jokingly, "Are we still friends?" and I said, "of course" and then we were able to talk about the Midodrine a bit more.
I agree with @
MeSci that this is a very good sign. These guys are under tremendous pressure, especially cardiologists, as they routinely deal with life and death issues. So it's really doubtful that his original reaction had to do with you.
Hi @
Gingergrrl the symptoms you are describing are very similar (if not exactly like) what I have experienced in the early years of my illness. Occasionally I will have SOB, but It's unusual, possibly because I have learnt to avoid the offending activities, and possibly due to the low dose atenolol I have been on.
The same goes for me too. I had much more SOB in the early years than I do now. I remember once staggering into my doctor's office,on the second floor sitting down, and huffing and puffing for about 20 minutes. I thought, "Wow! That one flight of stairs was way too much!"
Then I remembered I had taken the elevator.
But those were the early days; it's never that bad now. There are several simple things you can do to relieve dyspnea symptoms; I'll get to them in another post, as it's getting late here.
Many specialists think that this illness goes through stages over the years. That seems to be my experience.
Believe it or not, I almost left the hospital AMA tonight after having a horrible reaction to Midodrine and calling the nurses station for over half hour for help but no one came. My HR was 124 on my HR monitor and I felt hot, facial flushing, prickly, and thought I could fall if I went to bathroom on my own.
The nurse dismissed my reaction and told me that I needed to take the second Midodrine or I would be discharged by Dr C.
This is crazy. You don't need to be a medical professional to know that if someone's having a bad drug reaction, you don't give them more of that same drug.
That's one dangerous nurse.
I realized if I left AMA then nothing would be covered by my insurance...
That's one of those widely-believed myths that just isn't true. See
this article for details.
However, leaving AMA could easily have damaged your relationship with your cardiologist. Remember what he had to go through to get you into the place? So I'm glad you stuck it out.
Soon you'll be home, and I'm sure you'll be very glad to be there. Take care, and rest up well.
