Happy to find all of you

Specific Illnesses & Conditions VM/MAV
1

Although, I’m sad that there are so many of ‘us’ out there, I’m happy to have a place to go to talk to people who know exactly what I’m going through. Here is a quick intro. to me…
I’m a 38 year old mom of 2 (12 year old son and 9 year old daughter) married to my high school sweetheart and living in the small town in Ohio where we both grew up. I teach special education preschool.

I suffered from motion sickness as a kid and have suffered from migraines in the past prior to my first pregnancy. They were the full blown, aura, light-sensitive, head to a quiet, dark room and hide away with pain and misery for a few hours. After I gave birth, I didn’t have another migraine again. For the past 3 months, I have been battling severe nausea (I even did a pregnancy test thinking it was morning sickness!!). Nausea is a tough thing for a person like me who has a phobia of vomit…but that anxiety is a whole other story and forum worthy issue! :slight_smile: But, I got back from a weekend trip to the beach and had vertigo for a week and figured it was just from the plane ride and elevators. When it was lasting longer than a week, I decided to head to the dr. They treated the vertigo with Meclizine and Zofran. I also had a CT scan of my brain and sinuses and was given an antibiotic for an ear infection. All tests came back normal and when the antibiotic didn’t help, the dr. referred me to a ‘balance’ dr. After tests and exams, he diagnosed me with MAV and started me on Topamax (25 mg) at night. Initially, he wanted me to try it for a week and report back with progress. It was right at Thanksgiving, so I gave it another week. At that time, I was noticing a noticeable change in fewer episodes of the vertigo and nausea. I was having trouble with the Topamax with numbness in my fingers and feet (which he recommended taking 500 mg of Vitamin C at the same time, which has helped). I have also noticed that I have started to clench my jaw/teeth terribly at night. Not sure what that is all about, but it is painful in the morning, nonetheless.

I have had a very stressful and anxiety filled weekend, and am wondering if that triggered an increase in symptoms today, because I have been dizzy and more nauseous than in a while. Can that happen, even if I thought the meds were helping? Is it time to increase the meds to see if the nausea subsides? While reading this forum, many of the other things that I used to write off as something else, are actually symptoms…sinus headaches, dull ache in my head (I figured were allergies), ringing in my ears all of the time, blurry vision, fatigue, mood swings (anxiety/depression), nausea (I thought was acid reflux), severe sensitivity to sounds and lights, etc. I am still experiencing those things.

I just want a day when I feel good. I am sad, crying and fighting with my kids and husband all of the time. I have to wonder if it is because I just don’t feel good. I want to be happy and normal…I don’t even know how to do that anymore. What my other question is, too, is why is this a migraine that lasts numerous days? When I tell people that I have this type of migraine, they don’t understand why it isn’t going away like other migraines do. It is hard to get sympathy from people when they don’t get it…

Thanks so much for listening.
Julie

2

Hi Julie,

Sorry you’re in the same boat with the rest of us but glad you found the forum - there’s lots of support and info here. Additional stress and anxiety can certainly ramp up your symptoms even with medication. Many of us have to make lifestyle and diet modifications in addition to our meds to approach normal

Take a look at the excellent MAV survival guide if you haven’t already - lots of useful info and lifestyle tips to try if you haven’t already
http://mvertigo.cloudapp.net/t/vestibular-migraine-survival-guide-2014/2244

I suffered dreadfully from nausea as part of my mav but have found a great deal of relief by taking feverfew daily. I am now rarely troubled by nausea, even when the other MAV symptoms are bad. Please note however there is no concrete clinical trial evidence to say for sure that this works to help MAV (unlike B2 and magnesium, which I also take). Of course I made a number of changes at the same time (meds plus the vitamin combo) so even I can’t say for sure that it’s the feverfew that is killing the nausea - but it is one of the actions of the herb so it seems to me a reasonable possibility. But as I say, there’s no concrete evidence that it’s effective, it’s just my personal opinion.

Other than that if you can tolerate the topamax it’s worth hanging in there with it as some have had great results on it - take a look at success stories to give yourself a bit of hope.

hang in there

Gabrielle

3

Hi Julie,

Stress and anxiety can cause an increase in symptoms as can many other things. Sometimes it’s just the nature of the beast - in increase in symptoms and no reasonable reason why. Like you, I so much want to have a day in which I feel good and happy and normal, just like the good old days.

I also suffer from emetophobia, a terrible affliction to be stricken with for one who has a vertigo disorder. It took me years to get up the nerve to take the ENG test because of the fear that the “unmentionable” might happen, but it didn’t. I truly understand this part of your anxiety. Have you tried ginger capsules?

Book

4

HI Julie,
Welcome to the forum. This is a life saver for many of us…it certainly has been for me. THere is a wealth of education as well as some wonderful, caring and UNDERSTANDING people here that you really can’t find anywhere else.
I have read that Topamax can cause depression for some, so I was wondering if you have gotten more emotional/sad since starting the Top? If so, perhaps some 5htp or an SSRI might help you out. The antidepressants are another commonly prescribed medication for this stuff. Good that you are tolerating Topamax.
Best of luck to you on this mav journey. You’re in good company, just too bad we all couldn’t have met at a ball game or something fun!!
:slight_smile:
Kelley

5

Hi Julie
Welcome to MAV forum. You’re in good company. I take topamax - 30mg. twice per day. I initially started @ 15mg. at night then it was raised. I noticed a decrease in symptoms at first, then it seemed like I the symptoms kicked up a bit again, then rapidly came down much more after that. In my reading, that seems to happen to some people with topamax. For me, topamax has been a miracle medication in gradually decreasing dizziness, neurological agitation, and increasing energy. You might try taking it early in the evening/late afternoon because it can be activating at one point, or you could be experiencing migraine at night causing you to grind/grit your teeth. I also use Advil or Advil Migraine as an adjunct med which helps, but ultimately I’ve had to restrict certain foods (see Heal Your Headache by Dr. David Buchholz) that trigger dizziness. Now that I’ve been on the topamax for over a month, I can eat a few more things now. And, there are a number of other kinds of medications to try as well. Hang in there and let us know how you’re doing, or feel free to send one of us a message.
Gail

6

Hi and welcome Julie,
There are some wonderful people on this forum, That might be able to help answer some of your questions.
I hope you’ll find this place as comforting as I have over the years.
I know our families suffer due to this disgusting Mav.
And it’s the last thing we want to happen, I’ve had Mav since my daughter was 10 years old, so I do understand your predicament, My poor long suffering hubby, has stood beside me for 20 years of this crap!
He’s a better person than I could ever wish to be.

I have one question.
Did this mood/anxiety/ anger, start manifesting after starting the Topamax or before Topamax?
The reason I ask is this is.

My mood became quite irrational after going on Topamax.
Sadly this is a common side effect of Topamax, as it’s also an effective Migraine medication, many people tolerate topa well, and find relief from Mav symptoms.
Unfortunately others become very sick on it.

The Anxiety component of Mav is real also, so I guess we have to find a way of dealing with it.
I find stopping what I’m doing and just “slow” breathing thru it helps.

If it’s not the topa making you feel so agitated and it’s the exhaustion of Mav, then If you think you can tolerate upping the dose “slowly” , I’d say go for it.

I say this not to nock topamax, but for you to know that it can happen on this med.

All my best wishes to you.

Jen
xxx

7

Hi Julie
It is true that instead of being sedating or calming, for some people topamax can be agitating and also cause feelings of depression,etc. And, some of your reactions could also be dosage-specific… working with your doctor around all this is the best course. Let us know how you’re doing.
Gail

8

So, thank you so everyone for your wonderful replies and wealth of information. I have learned a lot, but am also still confused by this all. So, here is an update…even just for me to document the past few weeks.

I ended up heading to our local health food store. The woman who owns the store and who is extremely knowledgeable noticed that I didn’t look like my perky self and inquired as to what had been going on. I filled her in on the details and the MAV diagnosis and she said, “No, that isn’t what is going on.” 2 years ago, every other person who walked through the doors of the store had the exact same complaints. It wasn’t until she became debilitated with it that she realized that it was a virus. She found a homeopathic treatment (ear ache tablets) that helped 80% of the people with it. The other 20%, she was able to help with an additional regiment. She encouraged me to talk to my doctor and begin getting off the Topamax (it was really reeking havoc on my mind and body). Well, my doctor’s nurse said that I could just go off it cold turkey (25 mg once a day) and I should be fine. BIG mistake. I went through a terrible withdrawl. I had such awful anxiety and depression that it was worse than anything I ever experienced. It has been 2 weeks since I went off the Topamax and I’m just as bad, if not worse, than before. Not only now am I dizzy and nauseous, the ringing in my ears is becoming more noticeable and I have a dull headache that just won’t quit. I am even having some ‘blind’ spots in my line of vision. I am exhausted and just want to sleep all of the time. Can’t quite do that 2 days before Christmas!!

I am finishing out the homeopathic regiment, but am not too pleased about the lack of results. I am back to taking the Meclizine and Zofran daily just to get back on feeling even a little normal. I am also going to see my ob/gyn to see if this can be related to hormones. I know that I have MAV…I just want to find the cause and address it.

I am going to browse around the site and see if there are natural remedies and such that bring relief. I am apprehensive about taking meds, just because I am not one who handles the side effects well.

Thanks again for listening. I hope that you all have a wonderful, stable and not dizzy, holiday!
Julie

9

gosh sorry Julie. You sound like me - i’d rather take something natural than a medicine because i get horrible side effects. Sometimes i’m even afraid of “natural” stuff - i even get side effects from herbs sometimes. I hate it. I’m barely starting celexa and am having second thoughts - thinking of getting off of it real soon too. causing horrible insomnia. i want to get off b efore i have withdrawls! i took a tiny little piece today but i think that’s about all.

i hate being sick. a lot of mine is anxiety even though i most liklely have MaV too. menopause has made everything worse so i’m thinking of maybe taking some hormones of some sort.

I hope you feel better soon!

Merry Christmas

i’m pretty much in bed today after not sleeping and now i have a cold - not exactly preparing for Christmas huh?
’
chris

10

Hi Julie,
I have been looking for your response, as all of us know those feelings too well. I am so sorry you are in a bigger hole then before. I, too, stumbled into a health food store at the beginning of this mess, and I had just started an antidepressent…namely Remeron. The lady wanted me to get off of it since it would put holes in my brain…her words…which certainly didn’t help my anxiety…she said she was in the same boat…on the couch on 14 different meds, and that she was helped purely from herbs. I thought it was the Universe telling me to give up on western medicine, and to try the herb routine. Long story short…it didn’t work and I ended up back in the Western world…which has helped so much.
I have found that it really just takes trial and error to figure which thing is going on with your brain that is causing this…it could be neurotransmission, a chemical default…electrical issues…I think finding a doctor who really knows his stuff is paramount. I’m pleased with this last doctor I am working with who went through all my meds, how I felt on them, what has worked, then did a viral panel and found that I have some serious CMV (a virus) issues…I actually tested the highest of half a million people in antibodies to this virus, and he believes that is what caused this whole thing to start…certainly a different approach than any other doctor…(one said anxiety, one said MAV, one said he didn’t think it was migraine)…this guy doesn’t realy classify it as anything other than an imbalance that is causing random symptoms…he approach…fix the underlying chemical balance…which is working well.
I noticed you said you were taking meclazine and zofran, and I wanted to tell you that I have gotten good results lately with promethazine/phenergan…it is an antihistamine type of med, but it has really helped. It is rx’d for motion sickness, anxiety and nausea…they use it for children, and it’s OTC here in Australia, but I needed a script in America…don’t know where you are…
food for thought…
Kelley

11

Hi Julie
I can’t imagine that anyone in the medical world would tell you to go off of a prescription medication like topamax without tapering it. BAD advice. I’m so sorry. If you want to try a homeopathic remedy, I used to take cocculus (spelling?) which is for motion sickness but it does help for dizziness and is used a lot by Meniere’s patients. You can find it online or at a health food store. I tried dozens of single and combination herbal and vitamin remedies for circulation, etc. that supposedly had been used for decades but nothing ever touched my dizziness that came from the alternative world. You could, however, take B2 (200 - 400mg) which is supposed to be good for MAV but I’m not sure what it does, and you can take it in conjunction with COQ10, magnesium, and a few other things. Have you figured out any triggers ie foods, stressors that you can work with or avoid??? That can often improve things immensely without medication.
Gail

12

Hi Julie,

Your symptoms sound very familiar to a lot of us I think. The anxiety is a tough one - it can be caused by the migraine itself, contribute to the migraine, be a ‘normal’ reaction to feeling so crap or a side effect of meds. Or a combination of all those things! Very frustrating.

The good news is that a lot of us have had great success in getting our migraines (including chronic migraine like you have) under control or manageable through lifestyle control (food triggers, allergies, sleep, exercise etc) and/or meds. I myself have great success with Prothiaden. It does have side effects I don’t like (weight gain and loss of libido) but for now that is a better place for me than chronic migraine.

Everyone has their own view on ‘natural’ remedies. Personally, if it has an effect I consider it a ‘drug’ - whether it comes off a tree or in a bottle. All can have good effects and bad effects. Some can work on placebo alone (that doesn’t bother me - as long as I feel better!). If you feel better after taking something and the side effects are not too bothersome I say go for it.
Burd has had terrific success with the natural approach so doing a search for her posts would be very informative I think.

From what I know of homeopathy it’s placebo only. Homeopathic remedies contain no active ingredient - it’s water or a sugar pill. They claim that water has a memory (of the active ingredient) - yet this memory appears to be selective - the water remembers the active ingredient but not all the poo, wee, dirt or anything else that it’s been over millenia.

As for the health food shop lady. Hmmmm. She takes one look at you and claims she can diagnose you? Based on a virus that was going around two years ago? All the people who ‘got better’ using her remedies would probably have gotten better anyway. That’s what happens with viruses- they run a course. I’m sure she’s well intentioned it doesn’t sound like she understands migraine at all. Even if homeopathy worked she gave you something for ear ache - that’s not migraine.

I can’t believe a nurse told you to go off Topamax cold turkey. Crazy! Tapering down is the way to go. You need to taper both up and down, slowly. The other thing is you won’t get ‘results’ overnight. It usually takes a few weeks and even then it’s not likely to be a magic moment but you’ll gradually feel better. But if you’re wary of meds I’d say try the lifestyle modifications first.

Hang in there and I hope you get through the Christmas season OK.

Vic

13

Hi Julie -

Just want to clarify a couple things - the teeth clenching was brand new, just started after you began Topamax, right? Never had it before? And it was very painful? If this is a clear case of a very painful side effect, then you have a good reason to give up on this drug. Just want to make sure you haven’t done ANY of that teeth clenching before you started on Topamax.

Also - the “numbness” in your fingers and feet, was that total numbness as in a complete inability to feel your fingers and your feet, or more of a tingling sensation? Because if you can’t feel your fingers or feet, you can’t take a drug that will cause complete numbness - so that right there is reason to give up on Topamax. But if you meant “tingling,” which I had early in my Topamax treatment, that’s a common issue that often lessens as your body gets used to the medication. I almost never experience that now.

I mention these things because it’s VERY important to sort out what is a side effect that’s clearly caused by a medication, and then what is a side effect that is something that’s tolerable relative to the problem that’s being treated - also, some side effects do lessen with time.

For me, compared to the possibility of not being able to drive due to severe episodes of dizziness, there were some side effects I was willing to deal with. Also, be aware that the full therapeutic effect of some drugs like Topamax may not happen until you reach a higher dose than your starting dose, and you may have to be on your final dose for 3 or 4 months before you really feel significantly better, as I did. When a doctor asks for a “progress report” after a week on some MAV meds, he or she may really be checking for side effects - which ones you are getting, if any, and how severe. Very often there’s no symptom relief that early. If you WERE getting symptom relief, you may really have been on to something with Topamax, so it’s a shame if you really aren’t able to tolerate it!

14

— Begin quote from “Victoria”

the water remembers the active ingredient but not all the poo, wee, dirt or anything else that it’s been over millenia.

— End quote

:lol:

15

Hi everyone!

So, I have some GREAT news and seem to have found something that has given me a complete turn around. I just want to say that I realize that everyone won’t have the exact same results as I have to my treatments, but, it is working for me and I wanted to share it with all of you, just in case I can help someone else.

So, I hit complete rock bottom…I mean I am talking terrible depression and the pits…‘I didn’t want to live my life anymore’ bad. I couldn’t get a handle on my life and was desperate. So, from the last time I talked to all of you, here is what happened:

-went to my regular dr. office for some ‘help’. Unfortunately, my reg. dr. wasn’t available and I had to see another physician. I was a wreck…crying, miserable, etc. Well, he began asking me questions, “What are you here for today?” I just feel crummy. “Describe crummy.” Vertigo, nausea, dull headache, ear ringing, cheek numbness, anxiety, agitation, uncontrollable sadness, etc. “Do you cry often?” Yes…I can’t control my emotions. “Do you find that you aren’t finding pleasure in things that you used to find pleasurable?” Yes…Christmas morning, when I should have been happy watching my kids opening gifts, I just wanted to go to bed. So, I saw where this was going…he told me that he sensed I was depressed…REALLY? I knew that. BUT, I also knew that it was the state of my health causing the depression…not the other way around. He was going to prescribe an antidepressant, but I knew that would just mask the problem. I wanted to get to the root. So, I told him that I would call back if I decided to go that route.

-went to my gynecologist the next day. He tested my hormones and ovary function. Prescribed my ol’ standby migraine med…Midrin. Recommended that I take 1-3 daily instead of the regular way, just to see if it helped the symptoms. Also recommended drinking a bit of caffeine each day. I don’t ever drink pop or coffee, but thought that I could handle a cup of tea a day. Results of his tests came back normal.

-4 days later, headed to my chiropractor who also does acupuncture. I spent 1 1/2 hours there and was enlightened. He examined me and told me that my C1-2-3 vertebrae were misaligned. He showed me the lists of symptoms that come with each and asked which one I HADN’T experienced…well, wouldn’t you know, in a list of 15 or so, the only one that I hadn’t had was insomnia. Go figure. So, he adjusted me, did therapy (electro stim on my upper back and neck) adjusted me again, did acupuncture, and adjusted me again. I went 3 times that week, 3 times the following week, then 2 times and am now down to once a week. I can honestly say that I feel like a COMPLETELY different person!!! NO symptoms to speak of. An occasional dizzy feeling if I get up too fast, but remarkably better. This past weekend, I felt a little out of whack (a kink in my neck) and the symptoms started to return. I knew what was going on, took some Advil and rubbed the area that was sore. Within an hour, I was fine. Now, I am also having therapeutic massage once a week (1/2 hour where she just focuses on upper body issues) and that is helping a lot, too. I even, after 3 months of not doing any kind of physical exercise, went back to yoga yesterday and felt great…no dizziness!!!

For me, this all made so much sense. I would imagine that everything got out of whack when I did my triathlon in September…right about when I started to feel miserable. I think that I must have injured those vertebrae and tensed those muscles during the race (it was really cold and I was probably tense) and that affected my whole being. So, I think that I found my root of the problem. Again, I know that everyone is different and I know that this isn’t what is causing all of your MAV issues, but maybe it will help someone. I hope that it does, because I know that I was on a downward spiral and not wanting to go any further down. I hope that all of you can find some relief…however it comes. You deserve it.

16

Hi Beachbum - so great to get good news here on the forum. I can totally believe your results… even though I was diagnosed with migraine variant and am taking topamax, I am also in physical therapy for my neck and have been adjusted a few times by an upper cervical chiropractor. I was having so much trouble with neck pain, foods, etc. and the dizziness. My neck is so much better, I’ve been able to cut back on the topamax, and I think I’m on my way to doing better though it can take awhile. It is remarkable what can happen in the C-1,2,3 areas of the neck to mess up our heads and health. Hope you continue to do well… I’m really hoping to be dizziness free someday as well.
Gail