Desperately seeking

Hi all,
I am feeling so desperate at this point in my recovery. I started verapamil 4 months ago and noticed some subtle changes in a positive direction. I went from a bedridden, nauseous, completely non-functional person to one that was much less bedridden, partially functional, and hopeful that the med was doing something. Well, the past week, I have decompensated to where I was at 4 months ago. I just don’t get this. Sure I’ve had some bedridden days along the way, but I have never had more than one day at a time, and with each passing day this week I have gotten progressively worse. I can barely walk again and am nauseous. I have not been nauseous in over 3 months…

Not only am I physically suffering, but emotionally I feel broken…

Any thoughts or advice are always greatly appreciated.

Lisa

Firstly, I’m so sorry to hear that. My thought is that maybe your body adjusted to the med dosage and it’s time to bump it up. Please don’t get discouraged. You are on such a low dose and perhaps you just need to keep on increasing. good luck at today’s appt. It came at a good time.

— Begin quote from “MAVNY”

Hi all,
I am feeling so desperate at this point in my recovery. I started verapamil 4 months ago and noticed some subtle changes in a positive direction. I went from a bedridden, nauseous, completely non-functional person to one that was much less bedridden, partially functional, and hopeful that the med was doing something. Well, the past week, I have decompensated to where I was at 4 months ago. I just don’t get this. Sure I’ve had some bedridden days along the way, but I have never had more than one day at a time, and with each passing day this week I have gotten progressively worse. I can barely walk again and am nauseous. I have not been nauseous in over 3 months…

Not only am I physically suffering, but emotionally I feel broken…

Any thoughts or advice are always greatly appreciated.

Lisa

— End quote

Something has upset the pool and it is hard to figure it out sometimes , perhaps the small cold just pushed you in the other direction. Can you talk to the doctor about adding another med to try and knock the symptoms out. Get something to knock out the nausea at least. Or is it time to add another med to the mix period.

I went through this when I had my teeth pulled a month ago and I am just now getting back to baseline.

Can you talk to Dr. about some more options that may help you Lisa. I am so very sorry you are feeling this way as I know how much you are trying, searching and want to move forward.

I do not know what the answer is but I hope that you are able to find some relief very soon.

Lisa and Timeless,
Thank you for the kind words of support and encouragement. I am just in such disbelief, fighting back tears… well, not fighting them back anymore, and can’t believe that I am back to the place that a tiny movement of my head makes me feel just horrible. I thought I would never be back in this place again. I tolerated the new dose yesterday with regards to my blood pressure and pulse, but I just am less encouraged about this med. I’ll see what Dr. Newman has to say, but it is only words, and I have to live with this minute by minute.

I apologize for the complaining, but I am just so demoralized and am reaching out.

Thank you again. It means a lot knowing you are all out there.
Warmest,
Lisa

What time is your appt today? I hope that he Dr. Newman can give you some options that may give you some relief…let him know how horrible you feel.

Is there anything that makes it feel any better? I had the terrible nausea about two weeks ago and had to take something for it and the good part was I was also able to sleep some extra hours that seemed to help also.

I’m also sorry you’re stepping backwards. Like soem of the others, I wonder if you’re not coming down with a cold or something, given the season. Please let us know what the doc says.

Lisa - it’s easy for me to say don’t be discouraged. But, in all seriousness, you haven’t even got to a starting dose. So, you cannot yet make judgments about whether it is going to work or not. I agree, though, to get up on the dose quicker, so you can feel better or move on to another drug. pls let us know how appt goes. I have spoken to many who got better on drugs, and it seems like there are fluctuations before getting better. It is just not a linear improvement . wonder what Dr. N has to say about that.

Lisa, I am sorry that you are so down. I agree with what has been said about getting the dose up and maybe adding something else. I would start with increasing the dose and try to get up to 120 mg and then see about maybe increasing it more or adding somehting else (maybe an SSRI). Good luck at the Dr’s and please let us know what he says. Ben

You guys are the best…

Just got back from Dr. Newman and here is the plan. I will switch over to the long acting 120 mg tomorrow for 2 weeks… then get an EKG. If that looks good, I will go up to 180 mg. He agreed to get more aggressive…and in a much more timely manner. He did say that he starts most of his patients on 120 mg, but that since I am so slight with a low bp and pulse he did not feel comfortable doing this. He feels more reassured I can handle it because my blood pressure has not decreased at all since being on 100 mg of verapamil.

Anything I have to be nervous about with the long acting version?

I still feel horrible, but at least I will be getting to a more therapeutic dosage.

Thanks again for listening to me.

Warmest,
Lisa

Hi Lisa,

Glad you’re back. I hate going to appointments. Must feel good to be back home. Wonderful to hear that he is going to be more aggressive. I never met anyone as sensitive to meds as I am, and I had nothing scary happen with the increases in Verapamil. The only thing that got bad was constipation, but I was able to manage that with lots of supplements.

Lisa

Hopefully, the plan will work, Lisa!!

Can’t help you with the long acting Verparamil but maybe it will be a better way to keep your blood levels stable.

Best,
Sally

really sorry to hear youre not feeling well, hope you get to feel better soon. Rembember, this too shall pass :]

sincerely,

Mikael

Thank you so much for your continued good wishes… I am really hoping my body will tolerate the higher doses and hoping even more it will help my symptoms :smiley:

And for all of you who read my “Colds” post… my barely there, nothing cold is now a full blown cold. Hmmm… ya think maybe that’s why I feel so crappy and have totally decompensated…lol.

I will keep everyone updated and hopefully have good news (for a change) to share in time.

Lisa

Hi Lisa,

Sorry to hear you’ve been feeling so awful, especially when things had been looking slightly ‘up’. I totally understand how ‘broken’ you feel. This illness is so physically and emotionally exhausting it’s just unbelievable.

I agree that your cold (no matter how slight) set things off. Personally, if I get sick it ramps up MAV so I think the cold is the fat kid who jumped in your pool.

Good luck with the new med regime and hang in there!

Victoria

Lisa: I am so sorry to hear that you are feeling so poorly, especially after making some progress. I know how you feel, it just feels like you are falling back into a big black hole. Hopefully the time release meds will help since our migraine brains just love consistancy, maybe having a constant level of meds in your system will do the trick.
My thoughts are with you.
Joan

— Begin quote from “MAVNY”

And for all of you who read my “Colds” post… my barely there, nothing cold is now a full blown cold. Hmmm… ya think maybe that’s why I feel so crappy and have totally decompensated…lol.

— End quote

Hey Lisa,

Sorry I’ve missed your posts and to read that you’ve taken a sudden downward turn. I’ve been away from the internet for some time so have missed all the goings on here.

I would bet the farm on the fact that your cold is solely responsible for your symptoms going through the roof. Whenever I deal with a viral infection, I ALWAYS feel dizzier from it. Herpes ruins me for about two days if the outbreak is a bad one. Colds and flus also do me in. This effect seems to get better over time in that viruses don’t take people down as badly. In the early days post VN, I caught one simple cold which pushed my symptoms so far through the roof that I crashed and burned like never before. I didn’t understand what was happening and panicked. The panic fuelled the migraine, I was dizzier, more panic … CRASH. It was from there I lost my marbles and had to be put on an SSRI. Had I understood what was happening, I would have avoided the meltdown: the cold caused decompensation and exacerbated the migraine. Instead of knowing this and taking it easy while the hurricane passed, I forced myself to work on the computer at work (I had only just started coming back to work) for long hours and endured massive panic attacks all day long. I understand what you say about feeling broken mentally. I was gutted after having felt better and seeing some postive trajectory happening to normalcy.

So hang in there and know that it will pass and you will return to baseline. Good too that you have Newman on your side and he’s throwing down the gauntlet. He’s going in for the MAV kill by increasing your med. Might as well load up on Verapamil and see if this is the one for you. At least you now know it isn’t having much impact on your BP.

Hope this finds you feeling better today … Scott