Not working, so frustrated. Help?

Specific Illnesses & Conditions VM/MAV
1

Hi all! :smiley: I’ve been following these boards for a little over a month now. I finally figured it was finally time to register since I want to join the support group and start talking with you all. Like many others, I’m getting really frustrated and down and am wondering if any of you could shed some light on my situation.

To start, I am 22, just graduated college. This whole MAV business made the last few months of school incredibly difficult, damped my social life, and left me a complete crab! Driving is so hard as well. As I am sure you can all relate, the hardest part of MAV is not the actual dizziness, but the effect it has on your quality of life. Sometimes when I’m rocking I have a hard time concentrating on a conversation or having fun. I am ready to be a normal 22 year old again.

So my MAV journey began with a “big bang” start on March 25th 2012. I woke up and stumbled my way to the bathroom rocking on the MAV boat freaking out and crying because I knew something was wrong. Two weeks later when I still felt like I was on the boat I knew it was time to get help. I got two misdiagnoses of BPPV before I found a doctor that recognized all my visual symptoms and put the MAV diagnosis together. I have always been “a little dizzy” and this year was the most troublesome, stressful, crying, sleepless year of my life-- so I’m not surprised it led to this. As per his suggestion, I read “Healing your headache, the 1-2-3 step program”. I stopped my birth control, quit coffee, and have followed the diet almost to a T. I’ve been on the diet about a month and a half. My primary care doc has me taking ibuprofen when I get my low intensity headaches.

That said, I have seen absolutely no improvement. I have recently begun a new intense workout regimen and low cal meal plan, and I feel dizzier than ever. I assume that’s my migraine brain freaking out with the sudden lifestyle change?

If diet is not working, what is next? Medication? I’m not too proud to take medicine, just terrified of the side effects since many of my relatives have bipolar and I’m afraid an SSRI will highlight that part of me. Does anyone have any luck on the beta blockers or triptans?

Trying to remain positive and keep hope that there is a light at the end of the tunnel. I have so many things I want to do in life that MAV would interfere with so it’s got to go

Can anyone shed any light or comment on my situation? I’m so looking forward to being part of a community that completely understands what I’m talking about. Sometimes I feel like non-MAVers think I’m nuts! :shock:

2

Julie, there are several different classes of medications that people have found relief from.

As you mentioned, some have found relief from the SSRI’s. Along those lines the older trycyclics have been found to work in some cases.

Some people have found beta blockers to be effective.

The 3rd class of medications found to help out are anticonvulsants. This includes drugs like Topiramate, which is what I have found to help me. I mention this because on this forum several people whose MAV manifests in the rocking sensation that you seem to describe seem to have gotten at least some relief from Topiramate. Obviously your mileage may vary, and Topiramate has some negative potential side effects, but it is considered a Level A medication for migraine prevention, meaning it has performed well in multiple Class 1 medical trials. There are beta blockers that are Level A as well, and one Triptan, but I don’t know enough about them to talk intelligently. Definitely ask your doctor about them.

Check out this medication list that Scott posted.

http://mvertigo.cloudapp.net/t/evidence-based-guidelines-2012-migraine-treatment/4142

As you will see, there are quite a few medications listed. This is both a good and a bad thing. It is a bad thing in that it means that there is no one way to try and fix the problem, but it is a GOOD thing in that it means that there is a lot of reason to hope that one of the medications will help you out. If you don’t want to start with a medication in the anti-depressant family, then talk to your doctor about starting in the beta-blocker or anticonvulsants family. They are pluses and minuses to each medication, but that is where your doctor can help steer you in the right direction.

Obviously the decision to take medication or not has to be yours. But in my mind you’ve done all the right things. You’ve got the diagnosis. You made dietary changes. You’ve been doing exercise. At this point, you got to do everything you can to fight to get your life back, and I think finding a medication to help you is the fastest path towards that. Talk with your doctor about the beta blockers and anticonvulsants. Neither of those have anything at all to do with bipolar or mental-health in general as far as I know, so maybe their potential side-effects won’t seem as scary to you.

3

Jamie your reply was extremely helpful. Very reassuring to know there are two classes of medication I could try before considering antidepressants, that definitely makes me more comfortable. I’m a patient of Dr. rauch’s so I am certain I am in good hands. My appointment is in a few weeks. Looking very much forward to starting the trial and error process with the meds. As you said, most people here seem to find at least one med that helps them function. Picturing that day keeps me pushing! Thank you again!

4

Actually Topamax (topiramate) is sometimes prescribed as a mood stabilizer for bipolar disorder. But I don’t think you should let this affect your decision to try this med class or an SSRI or tricyclic. I don’t believe taking a med can bring out these issues for you, at least I’ve never heard of that.

5

Ssris cannot bring bipolar out of the clear blue. I tend to show a few of the mood swings from bipolar. They say if you already exhibit some bipolar behavior, the majority of ssris can highlight that part of you, exacerbating your bipolar behaviors. Happy to hear I still have options!

6

I am sorry you got sick ended up here… But I know you can get so much information and support here.
I take nortriptoline, witch is a antidepressant. But if you are having serius depressions you take between 150-300 mg. pr. day. I am going for the 30-40. So it is only a small amount compared.

Hope you find your way. I know its hard.

Best fromLine

7

Thank you so much line!!!

8

Ugh…I’m so sorry you are dealing with this. I so understand the quality of life thing as mine was non existant.
I’m glad you have Buchholz book as this was and still is a great resource for me.
I am wondering about Verapamil for you, typically an easily tolerated drug I am on that as well as 2 other daily preventatives to be at about 95-98% functioning daily. I’m not sure what your triggers are, but I would think the college environment would be ver challenging…tons of social interacting, flourescent lights everywhere, perfume and cologne smells etc. Also you are right about the intense workout and food change…migraine hates that!!!

Pam

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Pam you are so sweet to write back. Yes yes the college environment was a nightmare. Fluorescent lights, powerpoint presentations, focusing, walking to class, just about everything ;). Fortunately I have a low key summer job so I can try to use the next few months to recoup and start my medicine journey. I’m interested in the medicine you suggested. The preventatives will definitely be my first choice. I had my MRI and my blood tests come back totally clear, so MAV would appear to be the logical culprit as diagnosed by Rauch.

So far haven’t noticed any individual dietary triggers. Being off the migraine diet was a tad dizzier than on the diet. Triggers for me are: changes in brightness, too much/little sleep, anxiety, rainy or overcast days, and loud music to name a few. I agree with you about my exercise and low calories; I can just hear my migraine brain yelling “what the heck are you doing to me!?!” :D.

What are some of your triggers?

Thanks again Pam, you’re very kind to reply!

10

Hi Julie,

So sorry to hear you are suffering from MAV. My migraines always flare up if I change routine, so definitely starting a new exercise regime would be a trigger for me, although I can tolerate a decent amount of exercise once I get used to it.

I got good relief from symptoms using a combination of propranolol and pizotifen. I had hardly any side effects from these. Some tiredness to start with, but that passed. My main side effect was from the piz, and that was weight gain (for me it seemed to remove the sensation of feeling full up after eating, which meant I was overeating compared to normal). Once my symptoms were pretty much gone I cut out the meds and had a reasonable amount of time fairly symptom free. Unfortunately I seem to have had a bit of a relapse recently, but I’m happy to start back on the medication again as I know that worked for me last time. If you’ve already tried diet/lifetstyle changes then I would definitely recommend the medication route. Hope you soon find something that works well for you.

11

Thank you beech! It’s so encouraging to hear you all had relief on non-SSRIs :slight_smile: