I’m starting my 3rd week of Verapamil and after a rough 2 weeks I’m finally starting to do a little better. Of course my Doctor wants to increase the dose at night. We will see. Anyways, I forgot to metnion at the appt (thanks to my wonderful brain fog) that I think I am noticing some water retention. My legs and ankles are quite skinny so it’s hard to tell but my socks are leaving a line which seems like some fluid retention. Has this happened to anyone else here and is it dangerous or just part of the “regular” side effects? I won’t be able to call and ask my doc for a few days so I thought I could get an answer here. Thanks
I do think that water retention and weight gain can happen. I am also on verapamil and havent had the water retention…but have had the weight gain…unfortunately! Definitely mention to your dr at your appt though… i have been on verapamil since february of this year with no issues except the gain…
Thanks for the input dee. I feel like I’ve gained 10 lbs in the last 2 weeks! But it feels like fluid retention because I feel just like I do when I have PMS! I totally forgot to tell the Doctor today at my appt! I can’t remember anything these days! I just hope the fluid retention isn’t dangerous. I read somewhere that if you retain fluid from the Verapamil that it should be stopped immediately. I hope that’s not the case because I think it’s working and I’m so med sensitive that I can’t think of another one to try that wouldn’t give me awful side effects. So, has anyone heard that about Verapamil?
I am also on Verapamil 240 SR in the AM and 240 SR at night, and have been for 4 years. I did not know about weight gain with the verapamil, but I am also on Nortriptalyne and with that one comes the weight gain for sure
I have a call in right now to the the PT who also does the med advice. I am supposed to increase my dose at night. I have leveled off with the side effects and vertigo and dizziness is a little better but now I have actually had a migraine sice last Friday. I usually don’t get the painful headache, just the vestibular problems. Maybe if I increase the dose the headaches will subside. I have never taken any meds for anything so trying to figure out what is going to help my MAV is no fun!
Count on your migraine symptoms changing and cycling…kind of how this yucko condition is! Glad your upping your Verapamil…it really is a great med for this!
Thanks for the encouragement Pam. It’s funny, I never had migraine with pain before. And today I took my son for a playdate and we walked to the park in 30 degree weather. Anyway, my ears are really sensitive to cold and I wasn’t warm enough. After an hour of cold breeze, on the way back I could barely keep my balance walking. I started having a panic attack and all I could think of is, “this mom is gonna think I’m nuts if I just fall over on the walk home!” Luckily I made it but just when I think the meds might be working, they aren’t! Does anyone else out there lose their balance just taking a longer than normal walk? Maybe it was the cold weather and it threw my ears off. This condition is so frustrating. At the same time my doctor sees what he thinks could be a dehiscence so when I end up really dizzy and off balance just from a long walk I worry that its not MAV and it’s actually SCD. I can’t remember if MAV sufferers also get worsening symptoms with exercise and straining. Do they?
Yes your symptoms can elevate for sure. Perhaps cold weather is a trigger for you. Im always afraid people are going to think I’m drunk with this MAV, for my needing a shoulder to lean on when balance is off!
I’m sorry I don’t remember if you already said this in a post, but do you have “Heal Your Headache” by Dr. David Buchholz? If not its a must read for all us migraineurs! :mrgreen:
Yes, I read that book and really liked it. I’m so med sensitive and have never taken anything and after the first go round with Verapamil at a higher dose I couldn’t handle it so I told myself that I would try to follow the elimination diet instead of meds. I only drink 1 cup of coffee in the morning and after day 3 of agonizing headaches from caffeine withdrawl and trying to cook migraine free(and sodium free due to hydrops in my right ear) I cracked. My Doctor told me not to do that to myself and it was more important for me to watch my sodium intake than the migraine triggers. He actually told me to eat a lot of a trigger to see if I get symptoms and if I do then I’ll know if it’s a trigger or not. I don’t know if that’s the right idea or not but for now I’m not going to go crazy trying to eliminate all triggers. I’m trying to eliminate most of them though. What is your take on that book and how has it helped you? I’d love to hear your input about it.
So I started the morning by writing you this long response and I tried to “save” it by pressing the save button below and somehow I lost it!!!
Anyway, I’m so glad you have his book. For me the book and these message forums were a HUGE catalyst for recovery in my ongoing MAV journey! Hmmmm, as far as Verapamil goes, this is one of the best meds for this thing. Did you take the SR form of it? Thats what mine is. Also, I also was soooooo med sensative before I got this, but I was at such a desperation/depression point that I was willing to take anything. I was surprised to see that the only side effect for me for all 3 of my daily preventatives was feeling better…oh and some weight gain!!!
I never did the elimination diet, it was just too much for me and the place I was in emotionally, so I can’t really help there.
As far as Buchholz book, well, I really can’t say enough about it. He really nailed all of my “bizarre” symptoms on the head and had me see that I wasn’t a loony bin as far as “strange” symptoms. Like when this first started before my huge attack, I would get this creepy crawly sensation on my forhead…sometimes to the point I could have sworn a bug was crawling there! I would get the same sensation above my lip and the bridge of my nose. My brain would rattle around against my scalp almost like bumper cars do…try telling a doc about this!!! I have also learned from his book, that alot of the body aches that I struggle with are probably Migraine related. I get them alot! My sister gets them as well and now my daughter at 15 is showing signs of Migraine with her body aches!!! (my poor baby!!) At least I know how to help her! Also the brain fog, confusion was bad as well as not really being able to converse with peolpe for fear of loosing words! I have a VERY sensative scalp, lots of nausea, and I still battle a woozy head. I don’t get the rotational spins…mine is more like everything in front of me moves around…but I think that is caused by nystagmus which hasn’t happened since May 2007. Anyway, I am probably confusing you right now. I apologize if I am! Its a long road to find what works best for you with this MAV, but I would tell myself each day, that I was one step towards getting better. That each day that I took a preventative, that I was one step closer to have a “normal” life again.
Hang in there and I am here for you. Please feel free to ask me anything. I found so much strength and hope in hearing any talking with others about their story, what works for them etc…
Pam
Pam
You just told my story! I have those tingly almost numb spots below my lip ( i thougt i was having a stroke!) and I can barely brush my hair sometimes! I am in a lot of pain with my body too. I thought it was fibromyalgia! My feet hurt so bad when I get out of bed right now and other times it’s my hips, back etc. The worst is trying to go on playmates and form relationships with my kids friends parents. Especially my sons cuz he is only 5 and this all hit hard just a few months ago even though I’ve been suffering for years. It all stared after I had my son although when I really look back I was having some weird stuff start before that after I got married. I used to ride carnival rides with my daughter and now all I can do is watch if I can even make to the park since crowds and malls and stuff give me horrible anxiety now. I always lose my balance a the mall. Too much visual stimulus. It’s so depressing. Bly son doesn’t know the difference but my daughter misses her old mom and it breaks my heart! And I’m so irritable from dealing with this for 6
5 years now I just want to cry. Pam, I appreciate so much your quick responses because sometimes I just pray someone will answer my post and then I don’t feel so alone. Thank you for that. Yes I was in shock when I read the headache book and saw how migraine can make your eyes puffy and even your nasal passages. I was almost considering sinus surgery! I went to ever doctor looking for an answer. All of my family and friends thought I was a hypochondriac. I can’t even drive
at night anymore. I used to be such a good driver that I even was a school bus driver! But I slowly started to notice some
things around that time. I could never drive a bus now. I can barely drive my SUV! I took a job as a cook at my sons preschool for free tuition and after 2 years working here (you can imagine. A loud preschool with 3,4,5 year olds running and sceaming) i have just gotten worse. I actually thought i might be slowly dying of something. Between th body pain, strange sensations, I get hot (thought it was perimenopause) sometimes I’m freezing, my feet and hands are so cold I can’t get them warm. Doctor said I had raynauds syndrome. Thought I had MS. The list goes on and on. I was shocked when I read in the heal hour headache book about feeling like cold water was running down your back. I get that too! I thought I might only be alive another decade if i was lucky. But I’ve had every test under the sun. So yes, MAV it is, although my doctor sees some very thin bone showing a possible dehiscence. He is not convinced and I hope it’s not. I would rather have MAV instead of a craniotomy! So I have filed for disability because I can barley work.
Oops I hit submit by accident. Sorry I rambled. Sometimes I just need to get it out! Thanks again for sharing your story. Bi don’t feel like such a freak anymore
Ahhh Leslie! I can also relate to what you said! I struggle with driving at night mostly because of other peoples car light flashing around!!! I have so many “just living life” triggers that I would have to live in a cool dark cave alone to have every one of my symptoms go away…well actually even then I would have some triggers left…harmones etc.
My family has had to adjust too. It’s really that we just have a new normal, ya know? I am way less social than I used to be. I watch 4 little ones in my home during the day, so really that is enough stress…so going out to parties at night etc…is really out of the question. It could be worse though. I am thankful that I asked to go on Effexor. At a low dose it works for Migraine, but I also know that migraineurs seratonin in naturally low and I was still feeling down, after I was feeling better with my preventatives…so I asked to go on it. It raised my level just enough that I feel good emotionally and I have basically no panic attacks anymore.
I am hoping this will all go away after menapause…thats what I hear at least.
Need to get my duaghter from school. Keep in touch!!
Thanks for the repines Pam. I have been pretty depressed because of this and have thought about Effexor but had a horrible reaction to lexapro once a long time ago and am now terrified of antidepressants. I live in oregon (moved 16 years ago from sunny Texas) and the weather has always got me down. In fact I never even felt like this until i moved here! How is the Effexor working and how bad were the side effects?
I can relate, I was so depressed when trying to figure out what was wrong with me…so so so depressed. I couldnt stop crying. I was afraid to move my head, for fear that the whole big attack would happen again. It was really bad. The first med I was put on was Nortriptalyne with which I am at 75mg a day and then the Effexor XR 75mg a day. I hate taking all these meds. I feel like an old lady always having to make sure I have my meds, counting out the pills, putting them into a daily pill box, etc. But at the same time I am so thankful for them, because I am able to lead a “normal” life again.
I had not one med reaction to any of my pills. I also have ALWAYS been med sensative and would ALWAYS have some kind of reaction to something. For whatever reason, I have had nothing but good from these meds. I think the Effexor has a horrible withdrawl when one is tapering off, but I will cross that bridge when that time comes. For now I continue on.
I think we migraineurs are med sensative for several reasons. I think 1 is that we have sensative brains and bodies anyway, we tend to worry alot and we FEEL everything. SOOOOOO you bring in a med, which we hesitate to take knowing that we will react and then the pill goes down and we say…feel that? that must have been the medicine, then our fear escaltes and the poor drug may not have even been to work yet!!! Having said that I know that there are truly bad reactions to drugs all the time, but I tend to think we Migraineurs are just overly sensative to these things.
I was so desperate to get out of my hell hole, I was willing to take anything!
Gosh, Oregon must be so beautiful!! But I totally get what you are saying about the weather. Barrometric pressure is a huge trigger for me…my head gets soooo woozy and I get so nauseas. Oh I also have Anti nausea pills that I carry with me at all times. Anyway, I think I had that one type of depression when the weather is bleak and you don’t see sun for awhile? I forget the name, but anyway, I don’t experience that anymore thankfully.
Pam
Yes I am still on Verapamil. So after my big migraine attack in May of 2007, I probably went for at least 6 months with a diagnosis of VN. Something wasn’t sitting right with me and that DX though. I went for some rehab (is it called VRT?) anyway, the doc thought this would help retrain my brain etc. needless to say, I still felt like crap, I still felt like at any moment I was going to have another big attack, weight was falling off me with all my nausea, I was sooooooooo fearful to be alone, so afraid that I would go to our church and lay in the back prayer room all day while my kids were at school. I felt such comfort there as I could hear our church secretary down the hall going about her business. I knew that if I needed someone she was just down the hall. So the doc that sent me to VRT, Dr. Joel Goebel was the one that did all the inner ear testing. I was soooo hopeful that something would show up wrong so that I could get a dx and get on with life…not to be the case. I fell deeper and deeper into depression after learning that all my inner ear tests came back normal. After constant internet diagnosing myself, I kept reading about Migraine…MAV. But to me Migraine equaled Headache and I never got headaches. Finally it dawned on me that my sister got migraines and Goebel said the migraine is heredatary. I called her to confirm and quickly called Goebel and begged to get back in ASAP. I got in and he started me on Nortriptalyne (one of the gold standard drugs for MAV). He started me on 10mg. I wish I could remember the ramping up, but I can’t!!! A short while after I was at my internal doc office and my blood pressure was a bit high and I remember reading in Buchholz book that why not use Verapamil to reduce bp AND help with MAV. So I asked the doc to go on that and she was fine with that. I take 240 mg ER in the AM and 240 in the PM. Then I found a new headahce doc Dr. James Banks. He is a terrific doc. Great bed side manner, takes all sorts of time with me etc. Anyway, still feeling not my best he suggested Effexor. He said the Effexor and the Nortriptalyne work in 2 different ways and so taking them together is fine. I take 75mg XR in the AM.
What a tough road this has been for sure. I am all over my kids with concern that they will have Migraine!!! And you know thinking about it, Buchholz says to increase verapamil when under stress, so he really likes this drug and feels its really an easy drug to tolerate.
