Anyone who uses diltiazem...question

[Cynaburst]

If you take dilitiazem, did you have side effects that went away after you took the drug for awhile?

I had a terrible night of insomnia and flushing/heat all over my body. I have been taking short acting diltiazem for a few weeks and started 120 Cardizem LA on Monday. I have been having periodic side effects, but last night was the worst. I also have a cold so not being able to breathe didn't help.

Any feedback from others?

Thanks.

[Pam Alexson]

I did get that flushing and it seemed to calm down after time and adjusting. The insomnia I do not know.. I did and do have ongoing issues that seem to recur but nothing seems related to the medication. Hope you adjust as I think it has been a good drug for my chest pain added to my atenolol and hopefully it will be beneficial in that respect for you also.

Pam

[Linda]

I took it for BP control for a while - wondered if those same side effects were due to the med or that time of my life. Prob a bit of both, but I really thought the med contributed.

Linda

[LindaSo]

I ditto Linda's comment. I have seen no difference in my insomnia with Cardizem vs. Verapamil. The huge difference for me is in the much improved chest pain.

[Chris_in_shed]

Lindaso - you said "Cardizem vs. Verapamil. The huge difference for me is in the much improved chest pain."

Is that improved with Cardizem or improved with Verapamil?

Thanks,

Chris.

[Cynaburst]

LindaSo switched to Cardizem from Verapamil as she was having chest pain on Verapamil. She finds substantial improvement on Cardizem.

I am trying Cardizem for chest pain and it is helping that...I am just not sure that I am in love with the rest of the effects of it. I am hoping it smooths out for me. Today is day 4 of the Cardizem.

[LindaSo]

Cyn is correct. My chest pain was on a worsening trend post myectomy with increasing dose of Verapamil. We (my MD and I) decided we had nothing to loose by giving Cardizem a try. I have gone from chest pain 5 days/week down to once every 5-6 weeks. Now, that is an improvement in my book !! Since I was previously on a CCB, I have seen no difference in side effects.

Cyn, I too hope that the side effects smooth out for you.

[Degrand]

Linda So
I see you had resecting of your chordae tendonae along with your myectomy.
Can you explain what and why?
Thanks.

[LindaSo]

Sure. The cordonae tendonae are those small thread like tendons that are attached on one end to the papillary muscle and the other end to the mitral valve. As you have probably heard, papillary muscle issues may be present with HCM. I was told postoperatively that I was very unique (like, aren't we all?). I had both a fixed obstruction with my septal wall, which wasn't that thick (1.9) and a dynamic obstruction (also known as SAM - Systolic Anterior Motion of the Mitral Valve). The dynamic obstruction was caused by twisting or tethering of those thread like tendons, which pulled one of the leaflets almost up and into my aortic valve with significant exertion. So, to repair this part of my obstruction, one of the cordonae tendonae had to be cut or resected. Otherwise, I had what looked like spaghetti.

This was an unexpected finding with my myectomy. This tethering or twisting of the cordonae tendonae was never seen on any of my preop tests. Cardiac surgeons always like test everything before surgery so that there are no surprises. I gave mine a surprise. This is a good example of why a myectomy should only be performed at a Center of Excellence. This was a very delicate portion of the surgery as you can imagine. Had I not had the procedure done at a COE, I would have surely had a mitral valve replacement. So, as a result of my surgical adventure, both my fixed (myectomy) and dynamic (resection of cordonae tendonae) obstruction repair resulted in a very positive outcome in terms of obstruction. Obviously, I still have HCM. My gradients are now very low. This is also one more reason why myectomy is the gold standard for relieving obstruction. If for some reason I had an Alcohol Ablation, I would still be obstructed. I hope this makes sense. Feel free to PM me if you have any other questions.

Happy New Year !
Linda

[Degrand]

Linda So
Thanks for the education. This might explain why some with HCM have obstruction even when the septum is not too thick.
HNY to You!

[marge newell]

Since May, I take 240mg diltiazem. Insomnia continues. I am looking for safe sleep medication. Anyone in the community had experience with insomnia side effect? It is a definite side effect of calcium channel blockers.

[Cynaburst]

I had issues with insomnia with the brand form Cardizem when I took it in a once a day form.

When I changed to a generic 2x a day formula made by a different manufacturer (Mylan Pharmaceuticals), I was and remain ok with this side effect.

I have found that every formulation affects me differently. I have tried 3 different ones and Mylan is the only one that works for me.

[mandksiders]

I take Diltiazem, 180mg/day but I don't have insomnia from it. I wish I could help more. I do know that when I can't sleep due to other reasons, I take a Tylenol PM- but I am weird because stuff like that, just using half a dose, knocks me out.

Good luck to you..hope you get your sleep issues straightened out!

Kaye

[Cynaburst]

As another interesting observation, I have been on 90 mg. of Diltiazem extended release in the morning, and on 60 mg. in the evening for about 6 mos. In those same 6 months, I have lost just over 15 lbs. which is just about 10% of my body weight. In the last few weeks, I was noticing more flushing happening from the Diltiazem, so yesterday I decided to cut back my Diltiazem to at total of 120 mg. or 60 mg. twice a day to see if that amount will still control my symptoms and reduce my side effects.

To Marge re: the insomnia -- have you tried finding a formulation that you could take in two doses - a.m. and p.m. For example, since you take 240 mg. daily, if you tried taking 120 mg. of the Mylan formulation of Diltiazem ER 12 hour capsules about 12 hours apart, (I take mine at breakfast and after dinner), maybe that would lessen the insomnia. Talk to your pharmacist and your doc. I wound up having to figure out what would work for me by talking to my pharmacist and researching the available drugs on the internet, and then just experimenting with the different types of diltiazem. It seems crazy that the same drug can affect you so differently in the same quantity, but I am here to tell you that it can.