My 1 Year Anniversary of 24/7 Dizzies

Wow, I cannot believe on Sept. 22nd, I will have been Dizzy 24/7, 365 Days. That is just sad. This has been the TOUGHEST trial of my life, as all of you know but I am thankful that so far I have survived this. We are all survivors.

Tomorrow is my darling daughter’s 1st birthday! I am so happy! I hate the fact though that her special day also brings reminders of the day my life changed forever.

2 days after giving birth, I awoke to my new normal- Constant rockiness/disequilibrium. I have lived with MAV attacks since the age of 10, I just didn’t know what it was. After seeing many doctors, getting tests, etc. I was diagnosed with MAV, finally grateful to have an answer. Since taking Topamax, I have not had an MAV attack! I just cannot shake this 24/7 other crap. What is it?!

Whether it’s another variant of the migraine, Chronic Subjective Dizziness, or possibly a leakage from my spinal block a year ago from my c-section, I know I need to keep moving forward in this fight.

I can say, without a shadow of doubt, that all of you have been LIFESAVERS! Seriously, I think I would be in a mental instituition if it weren’t for all of you. Knowing I’m not the only one living in this mess has been such a blessing. I wish that one day we could all meet and give each other big hugs!

The thought of living my life like this the rest of my life scares me to death, but hey, at least it is living?! I still have options and choices to try and I think I’m going to look into the CSF first to see if I have a leakage. I think the timing of having my spine punctured and this dizziness hitting isn’t coincidence. If not, I’ll try Celexa for the Chronic Subjective Dizziness which could be worth a shot.

This last year has rocked my world, shaked my family and has changed my life. I am no longer who I used to be but hope that I can keep pressing forward and can continue to be the best wife and mother that I can be. Well, “Happy Anniversary” to me! :?

I will be there soon as well :frowning: I just passed the 7 month mark. Just a couple questions, have you improved at all even say 10%? and has your illness changed at all or have the symptoms been the same throughout? I have to say I was about to try for a baby, but your story is making me hesitant! I have not tried any meds yet but will soon try verapamil, have u tried that one? I’m still at the point of trying to diagnose this as Mav it not, in my case I believe I had a virus that turned into mav im hoping dr hain will be able to sort that out for me nxt month. I wish you luck going into ur 2nd year!

i guess i have improved a little bit considering the fact that the room was completely spinning so dang fast i could barely open my eyes when it first hit! i guess it has slowed down a bit to this rockiness. i remember taking the eng test also thinking that, “whoa, this dizziness could be much, much worse.” so, yes, i do believe that it has “improved.”

no way- try for a baby! it’s the best thing in the world. i already have 2 beautiful babies and have always wanted more than 2 but i am hesitant at going through another pregnancy, i get super sick when i am pregnant and have to undergo c-sections and get super dizzy after the anesthesia so wondering if i will do it again but it is way worth it.

you will be in great hands with dr. hain. i actually do have verapmil right now but have not given it a fair shot- i already have low blood pressure and can’t go up high in dosage so maybe that’s why i haven’t really given it a go. i should try anyway!

best of luck to you and keep us posted with your treatment with dr. hain!

Im sorry you have to celebrate this anniversary! Our situations are similar since I also got dizzy after having my daughter, but it was 2 months after having her. It was my 3rd csection, and never had any problems with spinals or anything, I have thought about looking into the CSF, but since it didn’t happen to me right afterwards, I just believe hormones, and lots of stress contributed to triggering a migraine cycle. Is Topamax all you have tried? How do you find you cope with having kids with this illness? I find it the hardest part, as I used to be super mom before this, and now I just cant do as much as I used to. Everything is twice as hard and I find myself breaking down at the end of the day when they are in bed, wondering if this will be how I am destined to live? I have seen improvements from meds, so I know that is a good thing. I hope this year brings you some answers and you find relief. Happy Birthday to your daughter! My son turned 10 yesterday :slight_smile:
Rebecca

Don’t we have a love/hate relationship with Topamax? :roll:

If I could handle 200 mg, I’d be totally symptom free!! But I had to come back down to 150. It looks like for you, 100 mg has stopped the attacks (in my posts I usually refer to those as “severe episodes” of dizziness - the times where I couldn’t walk without holding on to something). How long have you been at that dose? 100 mg stopped the severe episodes for me, too, but I was still having some occasional mild episodes and that’s why I went up from there. However, from the time I hit the 100 mg dose, it took about 3 months and then the daily “wobbliness” stopped for me - I think that may be the same thing as what you refer to as “rockiness.” It wasn’t quite 24/7 for me, but it was a daily problem. I didn’t have it if I was sitting perfectly still or if I was lying down - if you have it in those situations, then your MAV is worse than mine ever was.

I think the term “head motion intolerance” describes what I was dealing with - looking right or left, looking down at a paper on my desk at work then looking up at the computer, looking at my plate when I ate then looking up at my husband, etc., were all things that triggered the wobbly or rocky feeling. (If I sat still for awhile, the wobbliness would be absent, so I can’t say I ever had it 24/7.) But my daily problem has been gone since 3 months after getting up to 100 mg.

I mention that in case you might not have been on 100 mg that long yet.

Happy ??? Dizzyversary. :lol: