Verapamil

Medication 💊 Calcium Channel Blockers
21

Joe,

Yes, it’s been real disappointing the way people have handled this. I totally lost one friend - she just thought I was being weak. “i have dizziness all the time and I just HAVE to keep going. I don’t have time to be bedridden” How sensitive, hu?

Another friend just got real nervous around me. I was always the dependable one in the relationship, she was more of the flake. We lost contact, until she found out I’m doing better. So as long as I don’t complain - i actually pretend that I’m better than I actually am - we’re okay.

A third friend just can’t mind her own business. She insists that I have Lyme disease and is always pushing me to go to her Lyme doctor. I’ve told her many times - I don’t need you to try to fix me, I just need you to stay connected with me, be a friend. She doesn’t get it.

Yes, you learn a lot about people when things are bad, don’t you.

I often say to my husband, I’m not sure how I would deal with it if the tables were turned. I think I would be frantic if he were this ill.

Julie

22

— Begin quote from “Julie”

Jen,

One more question - why did your friend decide to go off Klonopin?

Julie

— End quote

Hi Julie ,
there is a belief amongst neurologist that , it could slow down the readaption of the brain.
as you know the brain is trying hard to learn how to re-addapt, with our new situation.
re-learn.
the problem with Mav is our brain re-addapts and bang!! we have another migriane that nocks it out of wack again.

my forum buddy’s from mdds page, believe if they take it it could prolong things.
but then some are still taking it as it lowers some of their symptoms.
no one has found it to be a complete cure though. Not that I know of.
and Ive been visiting that site for a long time.
when I first whent on valium , which my Gp gave me due to the fact he thought I may have had epilepsy ,
I took it for 2 weeks and was symptom free, untill the anxiety kicked in and I started feeling really weird on the stuff, so I stopped taking it and the rocking cme back.
having said all that negetive stuff if some one isnt able to get out of bed, then the relief you’l get from this drug could well be worth trying it,
Julie, men love long hair. hee hee.
and yes I remeber the flintstones well.
pebbles so cute.
remeber that song , oh let the sunshine in,
i used to sing that to my daughter every time I’d wake her for school in the morning.
bam bam used to play the drums on it.
My daughter hates that song. lol
hugs jen.

23

Jen,

thanks for the interesting info. So tell me this, and I hope this doesn’t sound like a dumb question, but is it just benzo’s that these neurologists believe will slow down re-adaptation, or all preventatives?

Without any treatment at all, my course has been one of steady downhill over some years, and aggressively since perimenopause. Over the last year i was headed towards being totally disabled. I’m just not sure my brain was going to re-adapt on it’s own.

I didn’t seek medical treatment sooner because I didn’t want to take any drugs. I’m 54 years old and have never taken much of anything before this. I just finally had to give in, but I have avoided much benzo so far. I would hate to be addicted to a drug that isn’t even working anymore, and then have to go thru a withdrawal.

Julie

24

Hu Julie,
yep I totally understand,
no they said antidepressants as well.
and yet they use them for some people with migriane strange if you ask me,
Ive only had one appiontment with my new neuro, and he has been sick himself so I havent had an oppertunity to ask him all I 'd like to , I have a handfull of questions for when I see him next, after the very bad time I had with zoloft Ive done all I could to avoid meds.
but I do remember saying to him that antidepressants did nothing for me, he’s said under his breath mmmm probably made it worse, dont ask me what that meant as I was so flabergasted that he had given me a diagnoses, I think I was in fairy land. no joke!
if you have any questions you can think of, I’d be happy to ask them when I see him in jan 21st.
of yet he’d only prescribed periacton, CYPROHEPTADINE TABS 4MG,
which made me migirnae more, due to the lack of sleep as It made me figety and irritable,
so Ive been to see a gp for the other stuff.
sorry for going on.
cheers jen

25

This whole thread rings so true:

  1. I hate to tell any one about being dizzy
  2. I go years between hair cuts
  3. My first neuro-otologist started me on klonopin, and my second has reluctantly accepted it as a drug I’ll “need forever”: it has helped me function. I did cut down slightly on the dose, and then got stuck at my current dose. We did once try zoloft, but I hated it–for the two days I took it.

Currently I’m fighting through a nasty virus, and the worst part is that it makes me so dizzy. No one–family included–understands why I don’t bounce back. I’m so nauseated.

I do work, but I limit my hours. Only one of my supervisors has accepted the reason for my limitations as valid, and I work in the medical field. Other people I work with are skeptical.

My husband is sympathetic, but either over-estimates (she can’t go kayaking) or under-estimates the impact on me. It has shrunk my social circle, just due to the fatigue of dealing with this and some of the things I’ve been reluctant to try–live performances, boat rides, etc.

My daughter has MAV as well, and has done well on nortirptyline. Her current neurologist was going to try verapamil, when there was some question that the nortrityline wasn’t doing the job.

I had the opportunity to speak to a HA expert from NYC, and he’s doing a study on MAV in his clinic, and his two favorite drugs are zoloft and verapamil.

At this point, I hate being on the klonopin, but it does help me function. I consider cutting back, and then I’ll have a set back, like this week.

The chronicity of this hiddlen illness can be so disheartening.
kira

26

— Begin quote from “Julie”

Jen - that’s a cute story - “a migraine without a headache” not a bad deal, hu? (If they only knew) :slight_smile:

I haven’t had a hair cut in over a year! I tie it in a pony tail on the top of my head and just keep cutting the end off. I look like Pebbles Flintstone (not sure if you know who that is).

MSDXD - thanks for that great info. I’ll have my neurontin anyday now, and I’m going to give it a try. My next plan (it’s not that I’m negative, it’s just that my personality style is to always plan ahead - I was the oldest daughter of 11 kids, so i’m naturally on top of things - think this could have anything to do with developing such a severe migraine state?) :slight_smile: Anyway, as I was saying, if the Neurontin doesn’t do anything, i was going to try Top - but after hearing what you said, I may push him for verapamil. Like I said, my doc was against verapamil, but when I told him Tim Hain in Chicago uses it for 20% of his practice, he was impressed.

Thanks again, everybody for all the great input - this forum has been such a great source of support.

Julie

— End quote

Good luck with the Neurontin. I’ve heard mixed results with it. Mixed with Topomax as well. Definitely keep us posted. I’ll keep my fingers crossed for you.

Verapamil seems to be Dr. Hain’s first try with a lot of his patients. If it doesn’t pan out, he seems to move on to other medications like Effexor and Topomax.

I was concerned about Verapamil initially. I thought it might drive my pulse low, but he said to start the medication slowly, and that Verapamil was actually a “weak” drug on the heart. He turned out to be right about that, at least in my case. For others who suffer from a heart block, Verapamil is **not **the drug to use. It can increase a heart block.

If Verapamil becomes an option for you, I think it would be a good idea to review it with your GP & specialist first. We all seem to respond differently to different treatments.

27

Hello,

I have what I - and a few doctors - think is a migrane varient - seems like MAV to me, especially compared to the eMedicine article. I was on ativan for over 2 years for a weird pulling sensation, but decided to get off of it this summer. Then all heck broke loose! I am a million times worse now that I was before I got on the medication.

So I’ve been off ativan (and valium because withdrawal was sooo bad) for nearly 2 months but I can’t stop rocking, tilting, floating, etc. It is awful to lay in the bed and feel that way! No one understands… but those of us who live this every single day.

I just found out that I have tachycardia where my heart will beat super fast for no reason, and until I have a little procedure and possibly minor surgery to correct it, I am on a calcium channel blocker (cardizem) and a beta blocker (metoprolol) to keep my heart rate and pounding down. I have only been on it 5 days, but my “motion” is already changing. Sometimes it is better and sometimes it is worse. With the exception of a few days of BPPV earlier in the year, I do not have rotational vertigo, yet I have spun a few seconds today.

Just wondering if anyone else experienced a change in their vertigo symptoms while trying a calcium channel or beta blocker??? Do you think it may WORK if it is changing… or have these drugs ever made any of you worse? And did you get better when you stopped trying the drug???

Thank you so much for your help.

God bless and Merry Christmas!

DJ

28

Hi , mx
I dont have heart block , i have svt, people with heart block shoulnt be on verapamil, it could kill them,
jen

29

Dj, for me this drug has made things a little less rocky , but no huge changes yet, so I’m slowly upping my dose after xmas.
ps the side effect do go , unlike other drugs, after a week or too I felt fine.
I still rock but not as much,
dJ you have to wait at leased , 10 weeks for it to work for a migriane preventetive.
the dose for migriane is up to 300mg a day, that could take months to do this,slowly
jen

30

Hi Jenny,

I had to cancel my trip to Kansas City…my head was filled with lots of Tension and Tightness and Motion increased. The last few days have not been good…so the day i was soppose to leave (Xmas-Eve) i tried to get good rest since… my flight was not leaving till evening…so tried doing all the right things and still the tension in my head would not subside. The motion was intense…so i decided to stay home. Didnot want to deal with the Airport crowds and flying on a plane when feeling this way. I have been invited for Xmas here near home instead but told my friend i would rather rest and have a quiet Xmas. This condition makes you feel so fragile. So i will get back to Verapamil soon as all this motion calms down a bit.

Hope your having a nice holiday!

Joe

31

Joe,
It really stinks that this condition made you cancel your plans. I hope you got some rest and feel better. It does make you feel fragile, and frustrated, and limited, and can interfere with your social/professional/general life.

Sorry it stopped you from going to Kansas City.

I know you post on another dizzy board: I was checking it out, and one man had a saying about balance coming from within, and acceptance being crucial.

Kira

32

Kira…thanks for your kind words. I am feeling a little better. I think i made the right decision not to travel. Yes…this condition truly interferes. It’s like if you plan for the future…the plans sometimes have to be cancelled. It disappoints friends…but the new friends i have made seem to be more understanding. I have made some improvement since 1992 when this nightmare started. Before it was really bad!! I will begin taking the Verapamil maybe on friday.

Talk later…Joe

ps. yes…i post on another board.

33

Joe,
I found that board first, and I thought this was the same one at first. In this isolating condition, it helps to be in contact with other people who understand. I"m glad your friends are sympathetic. One problem with chronic illness is that people get tired of you having it, at least in my experience, so I try not to mention it. But it’s a part of my life. I’m tired of it too. I’m better than when I had a really bad flare in 2003, but it’s still here…

Kira

34

Hey Jenny,

I read your story and noticed that your dizzy condition started after going thru lots of stress too. Same with me…a number of years ago i was trying to peform and be successful at a job that i had transferred too. But it was way over my head so i returned to my previous job within the company. I tried sooo hard…going home with lots of anxiety/panic because i was getting behind and the supervisor wasn’t taking too well with me. It was just a mess! i really felt like i had failed…Then the Vertigo started…waking me up from night and i would be extremely sick to my stomach… then the rocking motion followed. What a nightmare! Stress can do some ungodful things!

Joe

35

Hi Joe sorry you trip didnt happen,
I know how it is, for me it’s some times too stressfull to do long trips,
this Christmas was wonderful tho and I’m glad I pushed through it, I’m paying for it now though, sooo happy, the kids most of them in their late teens played the wii game which was very loud and fun.
Joe try to keep possitive if you can there is bound to be a migriane preventative that will work for you soon. I know there is one out there for us all, it’s just going to take time.
with all of us keeping in contact like this , we can swap Ideas on meds and treatments.
And yes this is a horrible desease we have , many people with these invisible type of Illness’s just feel so very lonley , it takes time for family to take stock of the fact that we just arnt getting any better , they cant understand as we dont have anything they can Identify it to.
I think what we need to do is -care about ourselves take every thing slowly, learn to say no, if it’s something we just cant do!. If people dont get it Joe they soon will.
best wishes Joe,
jen

36

Jenny,

I agree with you that this board is very helpful for us. It gives us hope and support. I have had this condition for 15 years…so sometimes i get a little bummed out but rise back up. I am not afraid of it like i use to be. It just wears me down sometimes so i have to be very careful that i watch my diet, get at least 7.5-8 hours sleep and watch the Stress. Even though i missed the trip to K.C. my friend called me who i was soppose to go with said that it was snowing. So i stayed here in sunny california :slight_smile: I definitely take things slower…and only working part-time…that is all that i can do right now. I sometimes miss not making the extra money that i use to but you manage the best you can. I have found that most people don’t understand because they don’t know much about this condition or don’t know of anyone who has it. The ones that do have a bit more compassion generally know someone who has atleast had Vertigo and or Headaches. But when you tell them it’s more of a Silent Migraine and is more dizzyness…that is what throws them off.

Wishing you a happy new year and better health!

Joe

37

Ditto Joe
hugs jen

38

Jenny,

I began back on Verapamil today. If i have asked you this question before i apologize. When taking Verapamil did you have any lightheadedness…like when getting up from bed or getting into bed?

Joe

39

Yes Joe, get up slowly , and as you get up stomp your feet on the ground a couple of times like walking on the spot,
be careful joe take it slow, did you talk to your Dr about upping your dose ?
you should have your blood pressure checked every 2 weeks while doing this,
just to make sure your blood pressure dosnt drop too low.
jen

40

Jen…thank you very much for your answer. I will becareful when getting up from bed. The Neurologist who prescribed the medication did not say anything about having my blood pressure checked every 2 weeks. I will have to ask him about that. I am soppose to make an appointment in 2 months to see him.

Thanks again…

Joe