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New MAVER Same Story

Hey Everyone! I have been lurking this site for months but figured it was my time to join and contribute as I have seen so much hope.

I had mild migrains in college that a Tylenol would cure. I had 2 babies back to back breastfeeding in between. After having my 2nd baby 3 months post baby I woke up with the spins! Just had gotten the mirena iud. 2018 I felt off but wasn’t “dizzy” I went a entire year into 2019 and the month I stopped BF I had recurrent episodes of vertigo(HORMONES) I felt like every time I looked around with my neck I got so dizzy! April may June July each time while waking up in bed- vertigo bad vertigo once a month atleast took a meclizine and went back to bed. Went to the ENT who ruled out inner ear. Was referred to a neuro doctor who did a MRI and said migraines. I wasn’t experiencing every day dizziness nor did I believe my “migraine diagnosis” I was convinced it was my ears!!! But decided to kick red wine and Chinese food to the curb and my waking with rotational vertigo went from every month too every 2 months! Still wasn’t convinced saw 2 more ENTS-central findings. Did some VRT thought it helped just being optimistic but hard NO. Just makes your better days WORSE.

I had a vertigo episode in October 2020 and went all the way till January 17th of 2021 without a vertigo episode that left me in bed. On January 16th(the day before my last episode) I got my first covid vaccine and decided to reward myself with Chinese food for the first time in 6 mos(lol bc it was inner ear duh!) wham bam the spins my head was off my pillow and when I sat up I was on a tilt a whirl.Walked back into the ENTs office told him myself it was vestibular migraine(lol) he agreed retested me again for all of the inner ear tests but again -NEGATIVE but he wasn’t sure how to treat very well. Diltizam 120mg was started. I titrated up to 180mg. Constipation that’s about it. February 2021 I got on the heal your headache diet following dizzy cooks recipes. Slowly tapered off of coffee which was stoped 3/1/2021officially.

I have not woken up with the spinning vertigo for almost 3 months! But I still feel like I’m on a offshore fishing boat almost all of the time! I went to a super great neurologist on 3/20/21 who wanted my to do a steroid taper, B2, mag and return in 3 weeks. I don’t feel like the diltizam has helped me at all and I lol that I was even prescribed it. My neuro was also confused as to why that other than that it is a CCB. I’m beyond frustrated with feeling off balance as it’s been almost a year but since January it is NON STOP I hate laying flat too. Stopped taking the diltizam in March (was on it about 3 months) Started taking topamax/topirimate 2 weeks ago 25mg for 5 days then 50mg (whoa sleepy whoa swimmy headed this took about a week to go away!) but I’ve had shockingly a few good days and some decreased rocking so maybe I’m headed in the right direction. Side effects I got a little itchy and tingly as well.

Will update everyone as I continue! I know it is so helpful as this site has meant so much to me and so many others!

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Welcome, really hope the Topomax works for you.

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Hi Anna and welcome.

Large blocks of text are not easy on even good eyes yet alone us MAVers so I’ve broken your text into paragraphs to encourage more people to follow your story. Pleased you’ve found some hope here ‘with us’ and trust it will continue to be helpful to you. Great you felt able to join up and take a more active role. Wishing you all the best with your own journey. Helen

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Very true Helen thank you!

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Hi ! The fact you’re tolerating well the Topamax is a really good sign !!
I keep my fingers crossed for you and really hope you keep on improving.

Love your title btw. Very intuitive.

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7 days from original post just a short update- have had several really good days where I was functioning 70-80% met with my neuro who told me I needed to de introduce foods as the topamax was making me drop pounds (weigh 117) he told me to go eat a pizza literally. So I did and BIG problem felt really bad the whole next 2 days with some mini spins in the night. I asked him about increasing the topa from 50mg and he said I was small and seeing effects so didn’t wanna push to hard to fast which I’m okay with! Definitely staying away from pizza.

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Hi Anna, just curious if you are seeing more improvement with the topamax and what dose you had to go up to? Are you on any other meds Hopefully topa side effects haven’t been too bad?

Thanks very much!

Liz

@ElizabethHope18
Hey Liz! I am at 50mg and have been for exactly 3 weeks. I would say I am probably no longer rocking and swaying Except when I sit down on the toilet which is really weird but that forward sitting position is where I always felt it REALLY REALLY bad but it has deminished a TON. Still getting dizzy about every hourish or so but I can say it is making a difference so far. My neuro said that he expects improvement over the next 3 months and does not want to ramp up to 100mg to quickly. And I’m believing. Side effects- horribly tired the first week and increased dizzies. I have noticed my heart rate jumping up a little this week and have felt short of breath a little bit but I have asthma that I take a daily inhaler for so I’m not blaming it on the topamax but I am suspicious bc my asthma is very well controlled and I’ve been short of breathe several times a day for about 5ish days. But not terribly short of breathe just a little winded feeling. Tingling is starting to go away. I’m still really tired but I also have a 2 and 3 year old and just also cut out coffee so go figure. I know your body usually can adjust to meds after a while so I’m holding strong that these side effects will go away. I also had the itching at first that went away. I should also mention I’m a nurse too and these meds scare the S**** out of me too but I think I’ve found the best neuro in Alabama and I’m just doing what he says! I also do the HYH diet very strictly I cheated a couple of days and actually felt terrible!

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Glad to hear the topamax has been working for you. I give you a lot of credit for starting with that one.

I agree with you that being a healthcare provider raises the anxiety level 1000% regarding this illness. I think about patients I’ve treated with some of these meds and I’m thinking, wait a second, some of these are used as migraine preventatives too!?! I hope you have continued success on this med regimen.:pray:

I also give you a lot of credit for dealing with this with two little ones. I know that has to be really tough.

Are you still working as a nurse? I had to stop in Jan and still not out of the weeds. I may have to take a non-clinical role while this continues to get sorted out.

I hope you are feeling better today and thanks so much for getting back to me so quickly! :heart:

I have somehow managed to still work part time. I have thought very hard lately about going to a office like setting and leaving the hospital stress. Will see and Goodluck to you!! What meds have you started?

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Hi Anna,

I’ll PM you so that I can keep your personal story more about your experiences, etc. happy to answer any questions :blush:

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Updating- the topamax has left me BREATHLESS. I went to my pulmonary doctor and he said my pulmonary function test was in the dirt usually in the 70s now it’s in the 50s. I was on 50mg for about 2 weeks before I really started to notice my breathing was getting worse I stuck it out a week went to my pulmonologist who said let’s just say it’s the pollen etc out(I have very very controlled asthma) took a round of steroids and felt no improvement. Taking a second round now and increasing my inhalers and now I am unfortunately having to come off of the topamax as it seems to be the culprit. The topamax has done wonders in the month I took it but I can’t be so short of breath all the time. I’ve felt a lot of comfort coming here and confirming topamax and breathlessness and asthma exacerbation. Hopefully if your trying topamax it can be better to you! I would like to first note that my first few nights taking it I got very itchy for about 5 minutes. Slight whelps- should have stopped then but the MAV had me so ready to conquer any side effect-until I could no longer breath-that’s a hard no.

Hi Anna,

I’m so sorry to hear that the topamax isn’t working out in terms of the side effects :frowning:. I hope you are feeling better and able to breathe easier!

You tried it and it didn’t agree with you, but I really applaud you for giving it a shot in the first place and also for being such a strong advocate for yourself and going to the pulmonologist to get more clarifying information.

Please let us know how you are doing and really praying there is another med that will help you find some much deserved relief (from one nurse to another​:pray::heart:).

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So met with my Neuro yesterday my breathing is better and he wants me to jump straight over to zonegran. Which is a anticonvulsant with less side effects. He referred to it as topamaxs kissing cousin. Very skeptical that it will cause the same breathing issue and won’t work but only time will tell! Really was hoping to get on to something with better reviews such as Ami or effector but giving this a shot because the topamax was definitely having a positive effect on my dizziness.

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Hi Anna,

Glad to hear you are feeling better from a respiratory standpoint. I hope you have much deserved success with the zonegran and are feeling better very soon! :pray:

Thank you Elizabeth! How are you feeling?

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I wish you success with the zonegran. Sorry to hear about your breathing problems on topamax, that is scary. I’m glad to hear you are breathing easier and pray the “kissing cousin” comes with benifits and without side effects. :pray:

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Updating-took zonegran for a day just couldn’t stand the fact that I was taking something slightly close to topamax as my asthma Wasn’t completely settled. Started taking Ami 10mg about 25 days ago and WOW. From day 3 I wasn’t rocking and swaying anymore. I’ve progressively gotten better with some dry mouth and brain zaps and a wicked couple of headaches.

I went offshore fishing this weekend and all the rocking and swaying from the boat didn’t bother me at all!(SHOCKED)

I also strayed from the diet with some vodka and Swiss cheese. The vodka made me feel very dizzy but not fun dizzy-pre medication hell dizzy. I don’t recommend. And I only had a small amount.

Too soon to call Ami such a success story but I’m climbing out of that hell hole each day.

On a side note took a few puffs of some Flonase nasal spray and I felt AWFUL. Dizzy dizzy square one. Felt better the next day and didn’t do that again. Just did a saline nasal rinse. They say steroid nasal sprays are no no’s and I would 100% agree.

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Hi Anna,

So happy to hear you are feeling better! That’s amazing that you were out on a boat too!

Doesn’t sound like the side effects have been that terrible either? Any increased HR with the Ami or all good for now?

Have you noticed this med making work more manageable? I remember you were in quite the busy hospital environment.

So happy for you again! :+1::pray:

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