Hi Nance,
Thank you very much for your posts a week or so ago. Your symptoms that you described are almost exactly the same as mine. I am on about the two week mark on the Verapamil and had a few good days on it. I started menstrating on Sunday and havent been feeling well at all since then (the dizzies are feeling strong). I was wondering if you could share what your doctor has told you. I know you are being treated for MAV and hopefully you are still feeling better! Just wondering if you have any extra information that you received from your doctor that may be beneficial to me since our symptoms are so close! Did the Verapamil slowly start working or was it just that one day you noticed it. I have so many questions about this stupid stuff and cannot wait for it to go away!
Hi Kaylie,
I’m sorry to hear that you are not feeling well. I had an appointment with Dr. Hain in Chicago yesterday. He was very informative about this condition. I had a lot of questions for him. He took the time to answer each one. He said that Verapamil reaches it’s full effect at about 1 1/2 months, so I have alittle ways to go yet on it. (I started it December 18th.) I guess at around the 3 week mark, I started to feel alittle better each day. But, one day I woke up feeling almost normal. (pretty close to it. 
) I had about over a week’s worth of decent days. The best I’ve had in 9 months. I started getting the dizziness back on Saturday and today I started my cycle. However, it is not as bad as last month. Last month, I was in bed and felt so heavy headed/full headed around and during my cycle. He said it’s definitely hormone related. He said it peaks at around 35 then at around 50 (menopause). He believes I should take the Verapamil for 2 years. He said this will go into “remission” and not resurface until menopause when hot flashes start because of the constricting of the blood vessels. I am currently going to physical therapy, but he said i can stop. He suggested playing the Wii (balance fitness games, yoga) and playing ping pong. I guess it helps to tolerate motion sickness and the yoga/Wii helps with balance. I do however,need to increase my Verapamil to a whole capsule (120 mg). He stressed the importance of a good night’s rest and good sleep routine. He said to avoid MSG and caffeine. I think there is hope for us! - Nance
Hey Nance -
I saw Dr. Cherchi for aover an hour and Dr. Hain as well in August. Was Verapimil the first thing they prescribed for you? Did you try any beta blockers first? Dr. Cherchi wants me to start Propranolol at some point in the near future as soon as my Prozac levels off again.
Thanks -
Molly
Nance,
I tried Verapamil a few months back and my neuro started me at 120 mg? I couldn’t tolerate that high of a dose…it made me feel worse (really dizzy and sick) so I stopped. Just curious…what did your doc start you at? Maybe I should give it another try at a lower dose.
Thanks!
Colleen,
My doctor started me out on only about 1/2 of a verapamil capsule sprinkled on applesauce. I stayed on that for about 3 weeks, then I went to 3/4 of the capsule sprinkled on applesauce. Now, I am going to increase it to a full dose soon. When I first started on it, I was actually woozy/dizzy for a few days so I even would take alittle less than a half and then increased it over a weeks time period. I am soooo sensitive to medicines. Now, I am not experiencing any side effects. Only occasional constipation. Dr. Hain said that is a common side effect. This is the first and only medicine I’ve been on for MAV. I am currently only taking the Verapamil and some vitamins (Vitamin D, Calcium, fish oil, Vit. B complex). It is working. I’ve had several 90-95% days. Today, I am less because of my period. It is no where near as bad as before. Thank God! I would definitely try to work your way up on the Verapamil. Don’t give up.
- Nance
Hey Nance -
How did you handle feeling worse on the Verapamil for the first week. I would think I might give up if I felt more dizzy. I give up too quickly. How did you know to stick with it?
Molly
Thanks Nance,
I too, am super sensitive to meds. I only took the Verapamil for 4-5 days and I felt really sick and dizzy on it so I stopped. I have not taken any meds since October and have really been working on relaxing and controlling my anxiety around all this. I am ready to give meds another shot but I know now that whatever I try I need to start VERY slowly. The half a pill on applesause sounds like a good plan for me too 
Thanks for the info!!
Colleen
Molly,
It was hard to stick it out that first week or so on the Verapamil. I just wanted to throw in the towel. I am not very good at waiting things out and giving medicine time to work. I decided I had to give the Verapamil time enough to work because I was so desperate to feel better. I was in tears daily over this whole MAV thing. A nurse friend of mine kept telling me to stick it out and give it at least 3-4 weeks to work. I basically, layed around a lot and would watch t.v. ( but sometimes t.v. would bother me). It’s hard to feel this way with two young children to take care of , it’s not fair we have to feel these terrible symptoms. The only place I would go was my parent’s house and I’d sit in their recliner the whole time. I also wanted to give the Verapamil a good try because I didn’t want to have to try Topamax because of the side effects. I guess I felt more lightheaded/woozy along with the dizziness when I started the medicine. That has gone away. The first symptom to go away with the Verapamil was the "heavy headed/full feeling that this MAV caused. Then it kept getting better from there. Right now, I am battling with anxiety caused by this whole thing. I don’t like to go to stores, etc. alone. When I go grocery shopping, I stock up so that I don’t have to go as frequently. Dr. Hain said I will regain my confidence and the anxiety should lessen as I have more good days. It was comforting to hear others say they feel the same way. Those days where I felt about 95% normal, I felt the anxiety fade. So, I think he is right. Are you going to try and stick it out? Are you more dizzy on the Verapamil or about the same as without it? Dr. Hain also said you know when you are getting enough of the Verapamil when you start to get constipated. I know that sounds weird, but it makes sense. That is such a common side effect of it. He asked me if I was getting constipated and I said I wasn’t until about 3 1/2 - 4 weeks into it. That made me think, ok…it’s in my system and working. I just increase my fruit intake to help with that problem, which is minor. You are in my prayers. I totally understand how you feel. I’ve been there. - Nance