I'm taking hydrocholorothiazide as a diuretic, to prevent migraines. Before I started taking it, I had constant migraines for about two weeks out of every month. They were shutting me down completely. Now I have about two a year, which I treat successfully with sumatriptan. What a relief!

My potassium levels used to test borderline, so I typically eat a banana or a potato, or winter squash with lunch, and I take a potassium supplement. These measures put my potassium levels in the right range.

None of my doctors has suggested that HCTZ could be causing my symptoms. But I know it messes with potassium and magnesium, and I wonder if there could be some connection here--either that it's making my MG worse, even when my potassium tests normal, or I don't have MG at all, and the HCTZ is giving me these symptoms of fluctuating weakness--or making some other condition worse.

I am taking myself off the drug for a while to see what happens. I'm being careful to eat less salt, in the hopes of preventing migraines. So I skipped my pill yesterday, and I feel awful. I have intense pressure in my arms, and a sense of tension and nervousness--like a mounting panic attack. This is what happens every time I miss my pill. I don't know what it is. I assumed once that it was the feeling of high blood pressure, but I went to the hospital to have my bp taken, and it was normal. I don't have a headache.

Any ideas? Why does missing the HCTZ make me feel this way? And, any ideas about a connection between HCTZ and fluctuating muscle weakness--in light of HKPP channelopathies, or other ones?

I know I'm breaking rules here. I usually follow them. I will confess all to my neuro when I see him on Monday. In an ideal world, I would doctor-shop until I found one who was interested enough in my condition to take the lead in pursuing these things, but in this imperfect world I inhabit--well, the neuro I have now is the best I could find. And frankly, I'm so grateful to find a doctor who takes me seriously at all, that I don't want to risk losing him. I'm seronegative. He read my SFEMG's as almost normal. He often sees me with no discernible symptoms, and takes me word for it when I describe how I feel in the evenings. I don't respond to Mestinon, and I have no ptosis. I know that a patient in my situation could easily be dismissed as a hypochondriac, or diagnosed with conversion disorder.

Abby

Abby, Do NOT go off of any medication without talking to a doctor!!! Geez, woman, you know better.

It is dangerous. Many drugs need a tapered withdrawal. There are lawsuits out there against drugs like Paxil due to how hard it is to withdraw from and the neurological and other symptoms while going off of it.

I've not been feeling well but I was going to respond today about what you said in my post about switching even the TIME of taking the drug. Even that isn't a good idea.

We're not doctors. Only they can help you figure all of this out! We can conjecture and discuss ideas and support you but that is it!

Please find an internist or someone else to talk all of this over with, in case you aren't comfortable doing that with your neurologist yet. Do not harm yourself for the sake of an "idea."

That expert you saw thought you did have MG. Even if you have a CMS and/or MG or some other animal that is like it, you still have fatigable weakness and that is indicative of this "group" of diseases. It's dangerous to mess with it.

Okay, enough. Your family needs you to be okay. So do we. No more at home, mad scientist experiments, please.


Annie

Annie, I'm sorry I gave you something to do when you're not feeling well. I will call my internist when the office opens tomorrow and talk to him about it. I've gone off HCTZ abruptly before with his permission--back before I had migraines, when I was taking it for high blood pressure. I lost weight and my bp went down and I no longer needed it. So I don't think I'm doing anything dangerous. But you're perfectly right: there's no need to do this on my own.

Thanks for caring so much!

Abby

Abby, It's always my choice to do things, whether I feel good or not.

I'm glad you'll see your doctor. I know that your situation is frustrating the heck out of you. I totally get it. I always want to have definitive proof of things too.

Have you ever been evaluated by a cardiologist?

Celery is a natural diuretic, in case that is ever a problem in the future.

Did you know that migraines can be caused by a lack of acetylcholine?

Were you on the drug before MG symptoms started or after? I can never stop asking questions.

Annie

Annie,

I'm not really terribly frustrated. But I am extremely interested! If I can go off the HCTZ without causing any other problems, I think it's worth doing, to see if my MG improves.

I had an echocardiogram about ten years ago because I have a slight arhythmia which he said was benign. I don't think HCTZ is a beta blocker--just a simple diuretic.

My migraines seemed to have been caused by water retention related to my female hormone cycle. I started getting them badly about a year before I had my first noticeable MG symptoms. I had been on HCTZ previously for high blood pressure, after the birth of one of my babies, but my blood pressure normalized when I lost 50 pounds.

Man oh man, what a difference! He also put me on prophylactic ibuprofen. After the first month with no headache, I decided it was the ibuprofen that was preventing them and went off the HCTZ--wham! Awful migraine. Now I take the HCTZ and not the ibuprofen. In fact, now that I think of it, he had me taking the HCTZ only two weeks out of every month (the two weeks I was most prone to migraines). But then it stretched to three, and in the end I asked if I could just take it month-round. I just remembered that. So that's another thing that makes me think it's safe for me to quit abruptly.

Abby

Abby, I've corrected my post accordingly. I was so tired after I posted that I just got done with a mega nap. I also think I was on another planet, in a different plane of existence. Good grief.

I wonder if they didn't do enough looking even then. Water weight gain is usually due to the heart or kidneys. That's really odd to have it so bad just from hormones.

It might be time for another echo. Just to make sure things haven't changed in TEN YEARS!


Annie

Annie,

This is all pretty minor stuff! I wasn't retaining a lot of water--not so that I noticed. Just typical PMS stuff. But for some reason, it was triggering migraines. None of my other doctors ever heard of such a thing, and they raise their eyebrows when I tell them I take HCTZ to prevent migraines, but I went from having 15 migraines a month to zero as soon as I started taking the diuretic. Pretty dramatic!

As for my heart, I was having PVCs (premature ventricular contractions). Your heart beats a bit early, and then the next beat comes on the old schedule, so it fills up with extra blood and goes THUMP. Runs in my family. Now that I think of it, I can't remember the last time I noticed that. Aside from the devastating autoimmune diseases, I'm remarkably healthy.

Abby

Just following up--I got my internist's permission to quit the HCTZ. He just wants me to stop in for a bp check in a few weeks, which I'll do. So, now I'm being a good girl again.

Thanks again,

Abby