Hi everyone. Iām a newer member here. Iāve yet to be diagnosed with VM/MAV. Two neurologists said that it could be, but not likely because I have 24/7 symptoms and I donāt get headaches. They all think itās inner ear related. I have an appointment with a neuro-otologist in a week, so hopefully I can get a somewhat proper diagnosis.
Anyway, the hardest thing Iāve been struggling with lately (besides all the physical symptoms) is the feeling of complete loneliness and isolation. Itās really bringing me down and making my depression and anxiety much worse. All of my family and friends cannot relate whatsoever, nor are they very supportive. Iāve actually lost a few friends because I canāt do all the things I used to be able to do. Even when Iām around people, I often feel even more isolated because everyone around me is functioning perfectly and having a great old time while Iām sitting there dizzier than s@$t. Iāve even started to become resentful towards my husband. Just watching him pop out of bed every morning and head to work feeling and functioning like a normal human being almost makes me feel angry at him. I know thatās wrong and I feel bad because heās been nothing but supportive and AMAZING during all this. But I often wonder why me and not him? Not that I would wish this nightmare on anyone, especially him. Every morning when I open my eyes I have such a feeling of dread in my stomach, itās unreal. Every day literally feels like Groundhog Day and itās enough to drive me to complete insanity. I literally feel like Iām going to feel like this forever
Have any of you felt like this? Do you have any advice or ways to cope? I would really appreciate it!
Sorry for such a negative post. Iām just feeling really low and alone today.
Alexandra, welcome to the board and Iām sorry you are feeling rubbish.
Can totally relate.
The only way to deal with this is to fight it, but also to recognise some things.
Firstly - friends. Yes, a lot of āparty friendsā fall by the wayside ā¦ and you start to dislike those friends who never ask you how you are. But I have not lost a single best friend to this illness ā¦ theyāve all stuck by me ā¦ and Iāve actually got closer to one friend who has also suffered from chronic anxiety, because now I know how she feels and I can better empathise.
Itās really important to engage with your friends. Social situations help distract you, reduce your symptoms and make you feel less isolated. You donāt need to drink alcohol or coffee to hang out, there are other options. So push yourself to get out there, itās worth it. You will feel more like your old self!
The husband/wife thing is tricky. My wife is lovely but very ambitious and sometimes I wonder if I can any longer meet her goals in life ā¦ I do talk to her about this every so often but sometimes she treats me like Iām 110% fit and normal and gives me the same expectations ā¦ which can be frustrating (but at the same time pushes me forward to be the best I can still be so not an entirely bad thing!). I think you should be very pleased heās not ill
I had LOADS of anxiety & depression in the beginning ā¦ was a basket case ā¦ but this has improved, A LOT. Getting a lot of the symptoms under control with medication REALLY helped, but it still bites me every now and then and some days I can get very depressed. But over time things have improved for me so seeing that has given me the most important commodity, HOPE!
And finally my mental process with HOPE includes this: this thing has clearly morphed every 6-12 months almost completely so surely, eventually it will morph into recovery if Iām patient for long enough, right?!
So in short:
Your true best friends wonāt leave you
Get out and see your friends
Your relationship could remain a challenge
You are not alone in your feelings, itās all very ānormalā in a way
I keep a rather strict routine. Which yes, makes each day feel even more like Groundhog Day. But as you know, Iām so incredibly housebound that I try to find the littlest things to look forward to. Like checking my e-mail and Facebook first thing in the morning when I wake up, watching the noon news, enjoying food (when the dizziness and headaches allow), stuff like that. I have a time of day for when I watch TV, a time when I turn it off for some silence and get on the laptop, and a time of day where I get my shower. Iām fairly consistent with bed times but falling asleep is all over the place due to insomnia and dizziness levels, and now head pain levels have become a new factor.
Resentment is very hard but understandable. Thankfully this seems to work for me so far, I try to point the resentment feelings I get towards strangers (celebrities, random people on social media on my āfriendsā list who I never actually talk to anymore, etc), and somehow that has helped it not being directed towards my closest support system. And, like you said, I also couldnāt wish this upon anyone so I am very glad itās not happening to the ones I love. But donāt feel guilty if you have that thought or feeling, donāt feel guilty for any thoughts or feelings. I know, easier said than done, I struggle with guilt almost every single day.
Hang in there. I wish I had more tips that workā¦
This deserves its own post response. Totally feel like this sometimes.
Wake up at 3am ā¦ yep, still have symptoms ā¦ get up in morning ā¦ yep, ear screaming at me still ā¦ get up ā¦ yep imbalanced ā¦ go to kitchen ā¦ hard not to be distracted by morning symptoms whilst making breakfast trying to make those small manoeuvres ā¦ MUCH LATER ā¦ tired ā¦ need to get to bed earlyā¦ just like yesterday etc. etc.
Thank you for your reply! Iām glad you can relate, but Iām so sorry you have felt this way too.
Itās been hard for me to hang out and have conversations with a lot of people. It makes my dizziness so much worse. Itās like my poor brain canāt handle any sort of stimulation. I definitely need to push myself to socialize more, I think it would benefit me in the long run. My husband keeps pushing me to have a friend or one of my sisters over for a visit while my kids are in school.
Iāve definitely learned who my true friends are during this time. Even my familyā¦ most of them have been useless. I rarely (if ever) get texts from them just to see how Iām feeling. Iāve really tried to explain to them how debilitating this disorder is, but they just donāt get it! Again, because they canāt relate and I actually look normal. So they probably think Iām over exaggerating.
Getting my anxiety under control has been something Iāve been trying to doā¦ Iāve suffered with it my whole life, so once this hit it has gotten out of control! I recently started Lexapro, hopefully that will start to calm things down a bit.
Thank you for your wonderful advice, I appreciate it!
Iāve been trying to change things up a bit by having little things to look forward to. Iāve been trying to walk everyday with my son, so thatās been something. I need to think of more things though! I might try to start reading novels againā¦ but Iām not sure how that will go. I absolutely love to read, but it didnāt go so well last time.
Iām really trying to not feel so guilty, but itās so hard sometimes. Iām a very sensitive person lol. My resentment always gets worse during that time of the month, yay hormones! I like your idea of redirecting that elsewhere though.
Silly question, when you did you start getting the dizziness and such?
I know for me I didnāt get the headaches til months later and I was told thatās the brain trying to compensate but having issues. Iām a year in as of yesterday (ugh). I was doing realllllly well, until my doctor gave me an antibiotic for a fingernail infection in March which was ototoxic and it ruined my compensationā¦ 3 months later here I am doing a bit better, but now Iām sick with either a cold or sinus infection or something feeling very crummyā¦ and Iām very med sensitive so I havenāt tried anything except Claritin the other night but I broke it to be a smaller dose however it all came at once because the protective layer was gone. Made for a very scary night.
Regardless, youāre not alone and youāll slowly compensate, very very very slowly. It just takes time and patience. As far as the friends front, you realize who your true friends are thereafter who will ask how you are and try to invite you to things and make accommodations for you-- itās just going to take time before youāre at that step. In due time!
Hi there. Iāve been experiencing my dizziness for about 6 1/2 months now. I do have a little history of dizziness though. It was about 7 years ago over a 2 year period. My longest bout only lasted 2-3 weeks though. It was similar to what Iām going through now, but VERY mild. More just uncomfortable and I could still live a normal life. I havenāt experienced anything since then really at all. Expect for a few times over the past 2 years if I got out of bed to quickly or after I went for a runā¦ it would only last a moment though.
Iām sorry about your cold! Ugh, I feel you on thatā¦ Iāve had my share of them this year. My kids like to bring them home from school! I hope you feel better.
Thank you for your advice and encouragement. I do appreciate it
Jeez! Thatās a long time!! It sounds like it should settle down again with time, or thatās the hope at least. Iām sure youāre aware of techniques to kind of settle it down or more or less not agitate it further?
Sitting down for me helps even if I feel the rocking and car rides I donāt feel anything (sorta) unless Iām at a stop light.
Bah, I donāt know if I want kids now because of this condition. I donāt know how you do it! Are you able to take any antibiotics?
Currently, my cheek bones hurt, right is sore and left hurts. Last night right hurt a lot but I did a warm compress.
I keep spitting up phlegm and my throat is still sore. Itās like a dull sore though because I try to stay on it with the salt water gargle, honey with water and hydrating. Started to get pressure close to my temples today. Iām hoping Iām at the tail end, praying, because I canāt take any meds. The PA at the walk-in didnāt have much info except that itās only been 5 days.
No problem. Weāre a support team! Wish we had a cure tho
Ps sorry for my sickly rant, Iām just very concerned.
Sorry for the late replyā¦ the past couple days have been crazy. Yes, I am aware of the techniques to settle things. Iām definitely not very diligent with them though lying down definitely helps me too. I actually had my neuro-oto appointment yesterday. She was wonderful. And did diagnose me with MAV/VM. Sheās going to first start me on Nort. She said sheās āstubbornā and not going to give up on me. Itās so nice to know that someone is wanting to fight for me.
Ugh, youāre cold sounds awful! Iām so sorry. It sounds exactly like what my husband had a few months ago. It eventually passed on its own. I can take antibiotics, but it has to be a mild one because of my sensitive tummy. What about you? Are you feeling any better by now hopefully?
Living on the wild side, eh?
Iām glad you were able to have the appt and they were very good to you. It sounds like youāre in a direction of hope and meds (yay for starting Nori), which hopefully will work for you. Itās great you have a doctor who will surely be there for you. A lot of doctors just chuck meds and are hardly visible for responses.
How long did his take to pass?
Iām currently on Day 9 I think. Felt all the beaten down symptoms as of May 25. Still sore throat, it doesnāt feel as harsh, but itās been feeling the same. Still doing the nasal cleanses 2x a time. Water with honey. Sometimes salt water gargle (feel like itās irritating my throat more so times than being helpful).
I stay away from meds. Had an antibiotic back in March which granted was powerful, but it killed my compensation and took me roughly 2 months to get slightly better, but here I am sick again. I also have a sensitivity to magnesium via pill form. I notice if something irritates my gut, then it messes with my brain. I was looking at Azithromycin but, I honestly donāt know and trying anything is scary now for me. I tried a broken down Claritin last weekend and that caused a lot of issues, once again, it was broken down which the slow release was no longer there cause I destroyed that protective layer.
Oh ya I love living on the wild side my hardest thing is a regular sleep cycle and coffee! Iām super nervous to start the Nort, so wish me luck! People say how tired/groggy it makes them feelā¦ I donāt know how Iām going to handle that with my kiddos.
I think it took my husband about 2 weeks to start feeling relatively normal. He also had a nasty cough that took forever to subside! It sounds like youāre doing all the right things to get over this. Have you ever taken sovereign silver? I swear by it when we get sick!
I try to stay away from meds as much as possible tooā¦ my tummy is so sensitiveā¦ this is like the first time Iām going to be on RX meds in my life. Besides antibiotics.
Hahaha. Maybe this will help with the sleep!
Thanks! Iām wishing you luck since I also know the unsurity of trying something new and the reactions you may have, so Iām hoping only the best for you! @BHMaloney is on Nori and likes it. Just be careful of your heart rate cause it can make it race sometimes.
2 weeks? Rough. Crossing my fingers itāll be 2 weeks then to the T or sooner. I donāt know how Iāll go to work tomorrow with my once and awhile cough and my continuing of hocking up phlegm cause itās dripping down my sinuses. They donāt want anyone in the office whoās sick.
Iāve never taken sovereign silver but I just read about it yesterday or the day before. How is it on the stomach?
Ahhh, yes I agree. Good luck! Very much brain and gut connected.
Yes Iāve heard it can help with sleep!!! Iāll definitely keep an eye on my heart rate! Thatās no funā¦
Silver is totally fine on the stomach. I highly recommend it. Itās been a saving grace for me. I would maybe take a probiotic with it though. Let me know if you try it!!
Hmmmā¦ weary to try anything new at the moment since I had a scare recently of trying something new so my courage meter isnāt high yet lol.
Was your husband not congested the last week of it but just had trouble kicking the sore throat?
Ya, I donāt blame you for being weary! Iām the same way! Definitely keep it in mind for the future. Itās good to gargle with because it will kill all the bacteria/viruses in your throat.
Yes, his congestion pretty much went away. He was just really struggling with the cough and sore throat!
Ahh! To gargle with it-- I was thinking had to drink. Which product line is that then from Soverign Silver?
Good to know! Thank you. That makes me feel a bit more peace of mind, since I sinus rinsed this morning it wasnāt a lot and it came out thinner than it has been. I noticed yesterdayās rinse in the morning was thick. Oh and Iāve only coughed 1 time so far today as opposed to more yesterday, but my sore throat is still lingering.
Well, I actually gargle and then swallow lol. But, I suppose you could just gargle and spit it out? I get the bio-active silver hydrosol. They also make a nasal spray. Go to sovereignsilver.com. Ton of info on their website!
My hubby had a lot of yucky stuff out of his nose too. He also coughed up a lot of yucky stuff as well.
lying down definitely helps me too. I actually had my neuro-oto appointment yesterday. She was wonderful. And did diagnose me with MAV/VM. Sheās going to first start me on Nort. She said sheās āstubbornā and not going to give up on me. Itās so nice to know that someone is wanting to fight for me.
my hardest thing is a regular sleep cycle and coffee! Iām super nervous to start the Nort, so wish me luck! People say how tired/groggy it makes them feelā¦ I donāt know how Iām going to handle that with my kiddos.