The Vestibular Migraine & Secondary Hydrops Community
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#21

@Nattitudeā€¦Ive just started this journeyā€¦Iā€™m not getting my care at USCā€¦though it is good to hear you are happy with themā€¦thinking of switching to them if I canā€™t get help with my current medical groupā€¦yes i read USC has a good headache program which is why I want to go thereā€¦Im doing vrt but honestly it is not helping me and I dont think the place im going to experience with vestibular problemsā€¦Im waiting for authorization for my vngā€¦ENT said thats the only test she can provide meā€¦thank you for letting me know of those other testā€¦ill ask if i can get those doneā€¦as far as my current symptoms: headaches everydayā€¦pain gets so bad my teeth hurtā€¦dizzinessā€¦unbalancedā€¦shaky visionā€¦motion sicknessā€¦feeling bouncy when i walkā€¦my glasses makes everything worseā€¦nauseaā€¦jaw painā€¦ear popping and ear pain with headacheā€¦cant watch tv or computerā€¦barely use my phoneā€¦cant sleepā€¦and anxiety! So much anxietyā€¦ive cried almost everyday for the past 2 months! So much so my mother in law came to stay with me but she is leaving soon which makes me really scared because ill be by myself the whole day againā€¦ent said to take excedrin migrane for headaches and lorazepam for anxietyā€¦ive taken 2 lorazepam this weekā€¦and they help me so much with headache, sleep and anxietyā€¦this is the first week ive been taking medsā€¦the weeks prior ive been just dealing with them because of i was scare of not compensating and addictive properties of lorazepamā€¦but im so tired of the pain i had to take themā€¦all this started with an initial vertigo attack in juneā€¦then another one 3 days laterā€¦and 2 mild ones since thenā€¦this has affected everything in my life and im scared that i will be like this forever and barely 2 years into our marriageā€¦we had so many plans and dreams and I feel like they are never going to happenā€¦but yes it is really nice to meet someone local who is going through this


#22

@SolarVivi my heart goes out to you! Youā€™re not alone. I was extremely sick in the first 2 months. The anxiety off the charts. Taking ssris at dosages for depression made all my symptoms worse. Unable to sleep. Reacted poorly to the benzos like loarazepam. No relief.

Your ent is useless! Youā€™re on the right track but need to be w better doctors. Do you have an hmo? Or can you ditch that loser and go to usc? The ent I saw is a usc ā€œassociateā€ but heā€™s super old and not current w anything like mav or 3PD. The only thing he was good for was 1) getting in to see him quickly and 2) him ordering vestibular tests (the 3 i mentioned above) at glendale Adventist hospital which also was quick to get an appointment with. Since I donā€™t have anything inner ear related he was totally unhelpful when I asked him what could it be. Luckily I have a great vrt PT at usc who is really helping me in getting toward a diagnosis.


#23

@Nattitudeā€¦how funny you mentioned Glendale adventist hospitalā€¦my ent has one of her offices there and one in Pasadenaā€¦ent surgery associatesā€¦and yes i have an hmoā€¦i wish i had a ppoā€¦its been a nightmare!..but i called my insurance and they said i can switch to usc as my medical groupā€¦also i emailed a PT at uscā€¦Nora I think was her nameā€¦she was nice and helpful and said usc pt could help meā€¦again this would be out of pocket because of different medical groupā€¦is usc ur medical group or were you referred to them by another medical group?..
Im sorry the lorazepam didnt workā€¦im taking .5 mgā€¦dont know if that makes a differenceā€¦


#24

@SolarVivi
So Iā€™m still baffled why this ent says she can only order a veng. She can order all the tests I mentioned.
thankfully we have a ppo mostly bc my young son was born w a physical birth defect and he requires a lot of medical Care so we canā€™t be bound by the hmo restrictions. But when youā€™re young and healthy why would you pay the premium for a ppo?
so I go wherever I want when I want. I just started the doctor journey mid-June so I feel like Iā€™ve eliminated a lot of possibilities in a short time.

If I can figure out how to pm Iā€™ll send you the info for my PT at usc. She knows my case and can help you too.


#25

@Nattitudeā€¦so glad to hear your son is getting the medical care he needsā€¦hmos are horrible!..yup i never thought anything like this would happenā€¦again thank so very much for your help


#26

Yes, anxiety is off the charts and depression is part of it too. Totally normal for symptoms like this. Iā€™ve cried a lot as well, felt helpless for months on end. Feel like your life is over and death is near. Do I have MS? Or, some rare cancer? The mind will not stop worrying and trying to solve the issue. For the entire first year I was just trying to make it through each day.

Getting the right diagnosis/drug is a big part of the recovery, so get to a Neurologist ASAP. But also donā€™t forget to try things like supplements, exercise, change your job, and slow the brain down with things like meditation / yoga / tai chi. Over time, the body finds a way to heal, it just takes so much longer than we want it to. Anything that helps 2-3% is worth it, they all add up over time.


#27

Yes! My mind is always trying to figure it out! Itā€™s f-ing exhausting. I have recovered from this twice before and was happy go lucky but I donā€™t see how I will ever be carefree fagain after this bout. But first I must get better.


#28

Yes Iā€™f I ever make it there :joy::grimacing: but your right regardless who you see treatment is the same . From my research ( Iā€™ve done allot lol ) I think itā€™s common for a med not to work the second time round or it just stops working our bodies change . However there will be one that does work it may just be trial and error


#29

Iā€™ve been gooling all my symptoms since all this started trying to find an answer. Im seeing a neuro next week, hoping for some answers. Thank you for the recommendations. Ive recently started the supplements and the heal your head diet ( almost two weeks)ā€¦havent seen any improvements but it could be too soonā€¦this event has also made me consider a demotion, my current job has put alot of stress which didnā€™t help. I walk everyday even with my painful headaches and im starting to realize this journey will be a long oneā€¦which has, well, is difficult to acceptā€¦but not losing hope :slightly_smiling_face:


#30

It is hard trying to find the right specialist but it sounds like you are getting there. I was also told I had labyrinthitis back in April this year, but like you, I found it didnā€™t get any better and I kept going backwards and forwards to my GP - seeing different doctors every time! I must admit , I thought I had a brain tumour but was being told no your brain is OK! I managed to see one of the best guys in the UK DR Surenthiran, a Neuro-otologist, and he put me on a migraine elimination diet - similar to the one in the heal your headache book - and Pizotifen.
I felt like you at one point - that this was it for the rest of my life - but I have improved quite a bit since I saw Dr S in June and am hoping to go back to work in September. I am still not 100% - I was 75% better last week, but have dropped a bit to about 65% as I have had a cold which has set me back a bit. Hang on in there - the diet and tablets (when you are prescribed something) can take a while to kick in. You might want to look at this article by Charli Louise who also has MVBD - she also has a YouTube channel with lots of soothing yoga videos.
https://alifeloved.com/yoga-meditation-migraine-variant-balance-disorder/ :smile:


#31

Hi @Nattitude, I have a similar story to you (sorry for the novel). Firstly, thank you for posting, Iā€™m really glad you are joining this group. I know itā€™s helped me tremendously to know I am not alone, and hearing stories from others who empathize so much can be truly helpful. I was diagnosed with VM around March of this year - it all started in January of this year, similar to yourself, being sick with a bad head cold. I went on a trip following that head cold and the day after returning, I was sitting in my office and started feeling dizzy and blurry vision and like I was going to pass out (+ nausea). Trip to the ER resulted in nothing and thought I was just dealing with temporary vertigo. The out of body feeling is awful - I had it virtually 24-7 and the anxiety also did not help me whatsoever. Mind constantly going to the worst place. I ended up at two ENTā€™s, the second visit resulting in a possible VM diagnosis and he referred me to a neurologist who then diagnosed me. I have since moved back home to Maryland, where I am seeing a second neuro at Johnā€™s Hopkins which took me a VERY long time to get into see, and a lot of effort (calling for cancellations, faxing referrals, records, you name it). It is great you are getting in to see one soon - itā€™s hard to be persistent with the doctorā€™s offices but keep it up!! You have to advocate for yourself.

I had a good visit with the neuro at JHU in mid-July. Prior to that, I have tried 3 different meds. It took me a while to agree to the diet, but I think itā€™s really important to try that along with any meds you are trialing. I am now on my fourth set of medication, a combo of Verapamil and Zoloft. I am seeing some improvement which I am very hopeful about - of course, it has taken about a month to get used to both meds and I still feel like I am adjusting. I feel as though itā€™s mostly helping my blurry vision, head pressure, and the out of body feeling I get (the neuro diagnosed me again with VM + PPPD). Definitely have a ways to go, but I will take ANY improvement.

One thing that has really helped is that the neuro at JHU faxed all her recommendations/visit information to my Primary Care doctor. My PCP is really in touch with what Iā€™ve been through, and is much more readily available if I need to reach out with any questions/concerns and Iā€™m able to see her every two weeks or so if need be while trialing the new meds. I highly recommend establishing this relationship/team work between your specialist and PCP if possible. Additionally, I think the diet is helping me as well as Vestibular Rehab Therapy and trying to get in light exercise (walking uphill on treadmill or trying the elliptical, light bodyweight exercises, or yoga) at least 3 times a week. I am building up confidence to go out and do things like grocery stores to challenge myself (always helps to go with someone) maybe 1-2 times a week. I havenā€™t fainted yet so I just tell myself that every time.

I am so so sorry for what you are going through. Every hour/minute/second of every day can be a struggle to get through - getting through a day especially when you are feeling particularly awful honestly feels like youā€™ve been through a war. Know that you are not alone - you will find relief, even if itā€™s just 2-3% better at a time as mentioned above. I remind myself that I am not in a wheelchair, I can walk, and I can breathe. I am sending good vibes and hope your way for your doctorā€™s appointment. We are all with you!! Always reach out with questions or concerns.

Best,
Elizabeth