Confused about next step

Hi everyone,

Okay…need opinions

I was the one on Verapamil, got better for 6-7 months. I suffered a relapse after my husband’s health crisis. The relapse has been since like Dec. Tried effexor…didn’t work, created the opposite effect which was depression and gi probs, really bad side effects. Here I am just on Verapamil, which i increased. Anyways, I became very anxious, not wanting to leave house except for dr. appts for my husband. I now have been forcing myself to go out even by myself. Tonight I took my daughter for shoes at the mall and to pick up dinner at a restaurant. I accomplished the task of finding shoes after going to like 4 stores and walking the full length of the mall. I felt just plain weird. Nothing was spinning, but I just felt weird, almost like not comfortable in my environment. I then felt dizzy waiting for our food at the restaurant. My walking feels funny tonight and this kicks in the anxiety. But Hain’s office said what came first, the chicken or the egg…so in other words is anxiety causing my feelings or mav causing my anxiety??

I am now going to a counselor because my family md thinks I need to work on my anxiety which he thinks is caused from my husband’s diagnosis. My counselor…well…he doesn’t even want to talk about mav whenever I bring it up as causing my anxiety.

Hain offered me Celexa or Topamax, and Nortitrip. and said to maybe up my Verapamil. He gave me meclyzine and valium in dec. All these choices, then says valium doesn’t really work for mav. Does meclyzine? Cause I have tried both and Valium seems to just make me relaxed. I chose to up the Verapamil. Anyways…I am just confused. I am deathly afraid of meds after some of the experiences I have had effexor, lexapro, xanax. UGH. I am soooooo med sensitive.

I have been trying to forget about my mav,yeah, that doesn’t seem to work. I wonder if I should just ride it out. It did go away on Verpamil alone before. I am just so devestated that it is back. Is it always going to be like this? Everytime a crisis happens, it comes back??

After all this time, I know the answer, but I just want someone to tell me this will go away for good. My first visit with hain sounded like that. He claimed the hormone theory and said I would be on meds for only 2-3 years. I want so badly to belive that. I have had this for Almost 2 years…6-7 of those months were very good in a row.

I am tired of this. It is just plain not fair!!! I want us all to be free of this disorder. Why us? I know my faith tells me not to question this cross we have to bear, but I am so mad.

I needed to vent. My husband is dealing with something much worse and has to listen to my mav crap. I feel so pathetic. I know mav can’t kill us but geez, it makes our lives hell.

Nance

Hi Nance -

It’s OK to vent! This is very frustrating - nobody would choose this, that’s for sure. Incidentally, my husband went through cancer and had just finished chemo & radiation less than 2 months prior when I had my first major dizzy spell around this time last year. When it rains, it pours!

Stress is certainly a major migraine trigger, so you probably already know that managing your stress is actually a very important part of your treatment. If your anxiety is a problem area that you want to deal with in counseling, the counseling time may be better spent not so much on what makes you anxious (of course MAV would!) as what to do about it. While it may be true that your counselor just doesn’t know much about MAV, it might also be that the cause of your anxiety may not be of as much interest to him as focusing on what possible steps you may take to reduce your symptoms of anxiety.

At some point it may not matter which came first (MAV or anxiety), but it becomes a vicious cycle that has to be stopped - so if you can manage your anxiety with meds and/or biofeedback or deep breathing or yoga or massage or lavender scented bubble baths or romance novels (I have a co-worker who swears by them!) or whatever, then interrupt it however you can.

The hormones DO make it worse, and I too am hopeful that when this all finally simmers down for me (based on Mom’s history, that should be in the coming year or so) I will be in a better place MAV-wise. Hope that’s true for many of us!! Best of luck to you. Take care.

Hey Nance,

I know we’ve chatted about this already a bit but thought I’d just mention again for others to note as well that I think you should keep the door open for Celexa and not rule this out because it’s an SSRI. I’ve been on every single SSRI now and the ONLY one that didn’t jack me up and make me feel like a freak was Celexa (Cipramil in Australia). It’s totally bizarre that all of these meds in the SSRI class are very similar molecules yet can have such dramatically different effects.

Re the anxiety. I think you probably have both forms going on from what I am picking up: fear of MAV taking over your life again and stress from your husband not being well plus physiological anxiety created by the migraine itself. Who knows which one is the strongest but my guess is that they all fuel each other and it’s all one big mess. Tackling your fear of MAV is a great start and not easy considering you were so well. It’s almost worse to have been well and have it taken away again. Even if the counsellor doesn’t want to hear about MAV, I’d just accept that and work on whatever it is he/she can help you with. If you can settle down the psychological anxiety, the migraine will settle a whole bunch anyway so you’ll gain on that front. In the meantime, can you hit the valium and/or klonopin to get a head start? Think you have been on that anyway yeah?

Hope this all stops again for you soon. The fact that you were able to knock this out with Verapamil certainly makes for a positive outlook that you can do it again – possibly with another med if Verap has lost its grunt. I really think you’ll bounce back to being completely asymptomatic again.

Take care … Scott

Hey Nance

Like you I was once well then got ill again. Its devestating to be well and then not overnight. Its been almost 2 years since my relapse.

I’m not sure whether the meds made any difference to me or whether I had a random relief of symptoms. I’m back on Pizotifen now and its still up & down.

I’m in a nasty patch at the moment. I think you will have to get your head round the fact that this might not just be cured, but the fact you can manage it. Given your success with Verap, I’m sure you’ll be back to managing this again soon. This illness is so unpredicatable, thats what makes it so hard to treat.

Good luck

Luke

Dear Nance,

I am incredibly sorry to hear about your suffering. This illness is so physically debilitating, and beyond we have to grapple with people not understanding this “invisible” illness. This is, though, a very real illness that is, unfortunately, misunderstood by physicians and sometimes even family members. I am a clinical psychologist and have treated many pts with anxiety disorders, and not one patient presented to me with MAV symptoms. Anxiety simply does not cause the horrible symptoms that accompany MAV. Of course, with anxiety some people suffer from panic attacks, etc., but feeling chronically dizzy like we do is another story. That being said, this illness is terribly anxiety provoking. I am extremely worried all the time since having this illness. Makes sense - going outside is dreadful for us, and we are worried about our futures, etc. I truly believe that this illness causes anxiety, not the other way around. Of course, anxiety is not good for anything. maybe it can further exacerbate symptoms, but it is certainly not the sole cause of our symptoms - MAV is the cause. I truly believe that. I wish you well. You got better before, and I am so certain that you will again. Please hang on to that. Continue to keep us updated on how you’re doing. All the best to you. Remember that you are a strong woman - you are trying so hard. I give you so much credit for going shopping with this illness. You sound very courageous.

Lisa

Nance I’m so sorry you are going through such a rough time right now. It must be so frustrating to try to take care of everyone in your family when you are trying so hard to hold yourself together.

Going to therapy is a great step you are taking. I’m sorry to hear your therapist isn’t well versed in MAV. This is an extremely anxiety provoking and life-changing disease and it is a major part of your life and something you need to talk about. I hope he will be more open to letting you vent about it. I don’t believe that anxiety causes dizziness or vertigo, but diz/vert definitely cause anxiety.

I really don’t know what to say about your med choices. Like you, I am also very med sensitive and hate to try anything new or up a dose. I do take valium or meclizine as needed, though I try to stick with the meclizine, not the valium. It’s been almost two weeks since I have meclizine and three for the valium. But there hasn’t been an hour in any of the last 2 weeks that I haven’t wanted something. Have you found meclizine to help you? I know it’s best to stay away from these and only take them when really needed but it sounds like your situation is a little dire right now and you need something to get you through this rough spot. I don’t mean to take something every day but maybe once or twice a week?