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Two months in and currently on no meds

Hi everyone! This my first post and I apologize in advance for the length of it, I am sure the bobbing will go into ultra speed for me after I am done typing this.

I don’t even know where to start but here goes. In late January of this year my hubby and I took a road trip to Boston from our home which is about 6.5 hour drive. There were several factors against me that day, left very early a.m., didn’t drink enough water, wasn’t very hungry, had a small accident on the Mass Turnpike (a GIANT chunk of ice flew off someone’s truck and hit ours) and I took a calming supplement and a dramamine. I don’t think I was treating my body right that day. Anyhow, I ended up having a huge panic attack at a restaurant right before a Boston Celtics game later that evening. I thought I was going to pass out. I couldn’t shake the aftereffects for several weeks.

I finally went to my GP and he prescribed me Zoloft. My anxiety was really high and I was starting to not want to go anywhere. Probably in fear that would happen again. Funny how our brains work and fear gets stuck. So off I went with my bottle of Zoloft, GP wrote me out of work for the first week. Well I ended up having the roughest time ever with it though I was on Effexor and Lexapro in my early 20’s. This was hell. I had bloody noses, fainting episodes, panic was off the charts, funny dilated pupils and monster toss my cookies moments that lasted for hours. Plus so many other problems. Back to the GP after taking it for 13 days and he said stop cold turkey it’s only been two weeks you’ll be fine you may have slight side effects.

On my fifth day off like clockwork I woke up and started walking to my bathroom. Instantly I knew something was wrong. I had major dizziness of the side swaying kind, bobbing head, pushing and pulling, the floor was tilted and I had marshmallow feet. There was also brain fog, nausea, fatigue etc. I figured umm ok this is just Zoloft leaving me system. A week went by no change, symptoms worsening. So GP visit again. Oh you have vertigo and nystagmus, here’s meclizine and promethezine, go to Physical Therapy.

The PT confirmed I did not have traditional spinning vertigo, which I clearly knew and I also did not have nystagmus. I felt slighted and pushed out by my GP. He was obvi sick of seeing me.

I went to another doctor in the practice and she said it could be Zoloft or maybe not but from what she could see my ears looked fine. Two weeks in at this point.

I finally got in to my neurologist last week whom I love and has helped me with migraines and another neuro issue in the past (never dizzy issues as this is a first for me). He is very patient and gathered all key facts. He believes this could be a triggered vestibular migraine or lack of seritonin or both. Both triggered from stopping Zoloft cold turkey only 13 days in. He did tell me that he would have done the same thing and advised to stop cold turkey only after two weeks.

He put me on Indomethacin for 2 days and then another 5 days with magnesium. That did nothing, more dizzy. After that he called in a prednisone taper with a small dose of valium and I have not taken either. I don’t handle prednisone well and from what I see it doesn’t do to much to help. Valium frightens me as I have a brother in law addicted to opiates and my husband and I steer clear of anything habit forming. PS- I also have an ENT appt with someone who specializes in dizzy issues in June. LONG WAIT!

I am waiting for my neurologist to call me this afternoon I would like to talk to him about Nort and the possibility of starting it asap. SSRI’s will not be for me right now after my Zoloft reaction that seems to have set me here. I have to do something quickly because I left my job of 5 years for a better paying one but didn’t think this was going to last. I walked away from the ability to have full paid time off on a leave of absence. I now feel super pressured about finances and also have horrid anxiety so I can’t catch even a day to try and unwind my body a little bit. The pressure in my head in the morning and sometimes afternoon along with daily nausea and bobbing head/swaying 24/7, terrible panic/anxiety (wayyyy worse then what I thought I had after Boston) for 63 days has ruined me.

I stopped doing VRT exercises a few weeks ago, I decided to wait until I saw my neuro. I started today and within one minute I had to lay down with my legs up in the air having syncope. This was weird because I was not having any issues handling them earlier in the past two months.

I have been following this websites posts and I feel encouraged and hopeful even in times when I can’t how many times I have cried in a week. Thank you for giving me hope and I hope I will be able to do the same sometime also.

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Hi Renee, I’m Renee also :blush: Welcome to the forum! You’ve had some very long, hard days that sound all to familiar to so many of us unfortunately. June is a long wait to see the ENT… have you had any vestibular testing performed to date?

Hi Renee! :))))

I have not yet. I actually had an appointment that I waited five weeks for only to find out it was on the day before. I cried for probably three straight hours and my husband kept saying “How did you let this happen? This was your super bowel!” Umm it happened because brain fog!

He’s actually very supportive despite a rough first few weeks where we argued a bit and nothing seemed ok ever.

I call the ENT office every week and ask if I can be moved to a sooner appt, they say I’m on a high priority wait list but again today the June appt is all they have. They are probably sick of my calls.

I’ve had right ear pain (maybe fullness too?) since day one of this and it increases and sometimes decreases in intensity as the weeks go by. I just want some relief even a single moment, my body and mind are exhausted!

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I completely understand all of that! My husband has been wonderful but the early days (first 2 months or so) he was frustrated with everything and everyone :pensive: It was 11 months of pure hell before I had a diagnosis and finally real help.
I wouldn’t hesitate to call the ENT weekly (at least!). I do hope your ENT is well versed in all Vestibular / neurological possibilities. The testing is no fun, as I’m sure you have read by now but absolutely necessary.
In the meantime while you wait for you appt… have you started any type of diet restrictions in case it is Vestibular Migraine? I do believe 100% (for me anyway) the dietary changes can make at least a small dent in it.

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Make sure to treat yourself well while you wait. I find that keeping hydrated is very important. Eat well and get regular and adequate sleep if you can. I’m sorry that you have to wait so long for an appointment.

Welcome to the forum.

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I appreciate any words of wisdom you have and the warm welcome! I have a copy of the diet and I’m going to work on it. Currently I’m only eating low sodium saltines and ginger ale in the morning, water through the day and at about two pm I’m slightly hungry for real food. I’ve eliminated caffeine months ago before this started but chocolate is my downfall. I haven’t eaten any in the past couple weeks though.

I’m not familiar with vestibular testing techniques. I’ve learned nothing is comfortable or easy right now so bring it on I guess! :grinning:

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Thank you! I’m trying to get my nausea under control to get back to eating a balanced diet and my old water consumption. But you’re totally right, sleeping and eating well has such an effect. If I don’t sleep enough I wake up on a very rocky boat!

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Hello and welcome, sorry you have to be here, but we are all big cheerleaders for you to get better. While not sleeping enough will certainly hurt, sleeping too much is also not good for the whole healing process. early on it’s hard to avoid and that’s understandable though. Like I’ve been told, and I now tell others , you will get better, gonna take some time but hang in there and take it a day at a time. In the very early days of this, I always gave myself a pat on the back or a good job at the end of the day for making it through the best I could. Strive to think of some positives at the end of each day too. Mental health is huge with all of this too, so be sure to take care of you, in the best way you can right now

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Absolutely agree with all the comments so far. Sleeping was something that eluded me for the first 11 months and the first night I slept through the night was a miracle for me. Rest is important but I also agree that keeping yourself moving is as important. Challenge yourself, rest and do it again :blush: For me, I had to learn that when I had a bad moment, I couldn’t let myself feel like it was the barometer for the “day” and if I had a bad day, I couldn’t let myself think it was the barometer for a “bad tomorrow”. Literally take one minute for just that… a moment in time. Agreed that this and any vestibular disorder is such an emotional and physical drain. Take care of you in any little way you can.
Here is the diet sheet from my Dr, it is pretty comprehensive and much more so than most but I have cut all of these completely and now after 4 months don’t miss any of it. It’s a step in the right direction for now and maybe will offer some bit of relief.

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Prednisone was the only thing that stopped my flares. Along with the valium to help the dizziness AND the side effects of prednisone, I think your Dr is doing the right thing to stop this. Long term, diet and a preventative med can help. I am on preventatives, but still get flares that only prednisone can stop. We’re all different, of course. Just wanted to share my experience. Hope you feel better soon :heart:

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Napagirl thank you for this info. After my horrific reaction to Zoloft I was scared to start prednisone. Did you have 24/7 rocking/bobbing and did those treatments stop it? I have no spinning sensation. I’ve got the meds here at home, I’m considering trying them now.

I feel so welcomed and understood here. Thank you so much for all of this information. I suppose it will be easy to start a migraine diet since I’m currently eating about three things from this dumb nausea. :heartpulse:

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I was having daily attacks of severe rocking, uncoordinated walking, severe fluctuating tinnitus. In between the attacks, I was walking like a drunk person, very imbalanced. We tried adding verapamil to my preventative, but I had headaches as side effect and still dizzy. I also tried meclizine, which helped me sleep, but didn’t help the dizzies. Finally was put on steroid pack, and by day 4, I felt 90% again. Steroids can make you wired, so the valium can help with those feelings. They can also cause insomnia, which valium can also help with. I also have severe neck spine issues, and the steroids took all that pain away for awhile- a nice bonus.

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@dizzydogmom if you take the prednisone, make sure to take it with food. Many take it in the morning, so as not to trigger insomnia later. But others find that taking it (with food) right before bed is better for insomnia as the wired effect hits them later. I did not have nausea with that last attack. The valium may help this, but you can also ask the Dr about an anti nausea med.

sorry you are here but you WILL get better. I also reacted bad to zoloft. And I also had the predinisone package, the problem was the insomnia. How was your experience with effexor in the past? many of us here use it and has helped us as preventive. I had the rocking 24/7, i think i have it now more like intermintentlly, mainly sitting down still.
Best

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I have funny neck pain too and I would take that as an added bonus of relief as well! I am waiting for my neurologist to call me back and answer a couple questions for me. I am thinking of starting it today or tomorrow.

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Thank you! I took effexor when I was about 24 years old. I don’t remember any bad side effects on it but once I felt better after a while I did a slow taper off and had a pretty miserable withdrawl mainly very bad camera flashes as I called them in my head. I am 39 now and am not sure how I would handle it due to my hormones changing etc.

If you use the Search facility on here you’ll find references to thst sensation as ‘Brain Zaps’. Pretty common I understand with withdrawal from SNRI’s. Helen

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You are so right Renee, sometimes I will have an exceptionally bad day, squashed between some good days. I can never predict it, it seems to have no rhyme or reason. Today was bad, I went into a store and the clerk walked me to another desk (very fast) and talked to me all the way with that and the fluorescent lights and glare off the floors I thought I might pass out! Some very dizzy moments today but I now know this isn’t an indicator of how tomorrow might be, it’s so changeable

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Welcome to the forum!

I had a similar reaction at the start of my MAV with Paxil. But since I didn’t know I had MAV, I stayed on it for about 7 months, then slowly and painfully titrated off. Amitriptyline is working for me, as well as CBD and the Cefaly device. Hope to hear how you get on with Nort! Do try to start at a low dose though to give your body some time to get used to it.