The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

I don't want to give up my life- dizzy


#21

I agree with @ander454, this is a very humbling experience. It teaches you to find happiness in different ways.


#22

hi! I started the diet like 10 days ago and I think it helps… if anything to simplify life because there are less things to choose from to eat :slight_smile:

just think that this is a cleaning process and it is just two or three months, then you can reintroduce stuff. For coffee, you can start with decaf and then cut that out. I read in multiple places that not giving up coffee was one reason why we don’t get better. I am not 100% sure about this, because I love coffee, but I am sleeping better without it, so I am gaining in other areas.

I also feel great running, swimming, dancing… seat me in a chair still and I want to die.

Life will get back to a new normal. :slight_smile:


#23

Hello @123isall

I am not an expert in this field whatsoever, but I did suffer from palinopsia (after-images) and used the method outlined here: https://www.mvertigo.org/t/how-i-cured-my-palinopsia/15781/7 to cure myself of these symptoms. In that post I mention how there is a soothing affect that goes on in my head as I’m watching it over a prolonged period of time which happens right behind my retinas. This led me to have an intuition that this might be related to migraine aura. Another person who had a migraine said that when they watched the video for a prolonged period of time that it made a positive impact on their headache. Again, I am not a specialist in this regard, and I do not suffer from migraines, but it may be worth a shot as I have a suspicion that visual snow and palinopsia and migraines are linked somehow, although no one has the funds to research this in conjunction with my method. If you would like to try my method and see if this has any positive affect on your condition please do, but please also refrain from doing so if you experience any negative side affects from the video. Again, I am not a medical expert and am in the dark here. Let me know if it helps at all.

Sincerely,
James


#24

One more thing, I was watching a presentation about neuroplasticity and how our brain can heal itself (https://www.seekingbalance.com.au/, this person has a very positive approach to vertigo/dizziness/tinnitus, although she is selling her programs, so don’t pay attention to that)… and she mentioned that instead of getting all anxious and say “how do I get rid of this?” you should say “how can I rebuild normal sensations?”… I think the brain needs to relearn what its normal. So it helps me to think that MAV is not a beast or a monster, but just my brain re calibrating, and I can help it by doing all my activities as normal as possible, be happy, laugh a little, and engage in the world like a normal person (plus diet, sleep, medication, etc, of course!).

Anyway my two cents of positivity for the day :slight_smile:


#25

I agree @dizzy3 on decaf, I still have decaf from time to time in order to feel normal (-:

Also agree @dizzy3 about neuroplasticity, although its still a really tough practice - try to find the “normal sensations”, that’s a great way to put it I think. Without meds though I’ve found very little to sense because of the crushing head pressure.


#26

I’m sorry you’re having such a hard time. Unfortunately there are big up and down swings with this condition, and you’ve definitely hit the psychological down. I was at the bottom in March and April of this year. My current diagnosis is Meniere’s Disease and Atypical Migraine. I take dyazide (diuretic) Gralise, and Claritin D regularly.
After about four years of being able to function within my own limits with only relatively short episodes of dizziness, this year I had a really bad 3-4 months physically and psychologically when my condition was the worst it has ever been. After making appointments with new doctors I got the help I needed. Two weeks ago I started feeling so much better, and my stress and depression has decreased to a “mom with teenagers normal level” again. I currently no longer worry every morning when I wake up whether I’ll be able to function that day.

I’m glad you’ve got a neurology appointment. That’s a good start. If you have allergies that trigger symptoms, go get allergy testing. I’ve seen a neurologist, ENT, and allergist to help me over the past 10-15 years; but wasn’t proactive enough in my own healthcare. As the doctors will tell you, they can’t do it for you. I spent days in bed because I thought that’s what I was supposed to be doing. I just learned this year that I should have been trying to get up and walk around, if possible, rather than spend 6-8-12 hours in bed resting.

Ask the neurologist if they think vestibular therapy would help. I just completed it. I should have had it prescribed many years ago. The therapist did warn me it is a very gradual improvement over months, not weeks but to just keep doing the exercises regularly. My eyes were shaky (nystagmus) before I went, and that gradually cleared up. After 10 weeks she did another evaluation (end of 6 therapy sessions spread out) and said she only sees a very little bit on my left eye. I still can’t walk a straight line with my eyes closed though.
My new ENT suggested trying steroid shots. I got two shots (spaced a month apart in April and May) in my “bad” ear. I think that has made the biggest difference in my recovery this time. Unfortunately, he mentioned that “the next time it gets really bad, we can do this again.” I am realistic enough to know that it will come back again, but can hope it won’t be for another few years.

Hope you find the magic combination of things that works for you.


#27

Hello
Can I please ask…when you have these horrendous relapses do you take or add any other medications to help you overcome the worst of it or do you continue to take the meds you mentioned and ride it out the best you can?
Like you…when i have “bad” days they last for months also …its the pits i feel so bad for anyone with this illness.
Jo xx


#28

Just my sixpence ’ worth. I’ve never been much for physical workouts, so can’t comment on that specifically - but I always wonder if something in the brain fires better when you are doing something (anything!) that absorbs your full attention…and/or relaxes you subconsciously?? My balance and focus can be way off for walking/everyday tasks, but when I go to work on my particular passion, stained glass,…I find I can focus pretty well and mark/cut/whatever pretty accurately…but walk down the passage to …do the washing up and bam! out of focus again??? And NO - this is not ‘all in my mind’!! Obviously, I don’t mean this works when you are really crazy ‘dizzy’.


#29

Well one thing is definite with ‘MAV’ and all audio-vestibular troubles - Distraction is a wonderful thing!


#30

Distraction certainly is wonderful thing. Absorbed in some task you probably relax more muscles completely and proprioception works better. Otherwise, are you sitting down doing your glass work mainly. If so it could just be you are using different bits of your balance system or using your balance system differently and somehow needing to place less reliance on which bit it is that doesn’t work as well as the other bits. Rather alot of ‘bits’ in there. Sorry but hope you get my meaning. The lighting situation could also be involved.


#31

Hi Everyone, I just wanted to share and also give my sympathy for what all of us have to go through. I have had this condition since 1993. Pretty much undiagnosed but it’s a long story. I have been to many doctors in the last 25 years and have tried meds etc. I want to try VRT but have to find a doctor who will prescribe it. So I’m not sure if I have MAV but by process of elimination it could be. Lately all has been worse for me. I used to be able to walk 2 miles in the morning. But now after a half mile the drunken walk starts and I struggle to stand or move and I am too embarrassed or too uncomfortable to push on. I have the spinning vertigo at times and it strikes with no warning so I am scared to do much. I don’t know if this is encouraging or not but I have lived for 25 years with the symptoms and have had very good times with family and friends through out my life when I am feeling sort of up to it. Or just tried to ignore it for events that I would not miss. Lately I feel like just giving up on all of the trying to figure it out, I just tell myself I have to live like this. Worse part I think is yeah people don’t understand, I try to tell as little details and just say I’m dizzy if they notice my symptoms.
Sunshine


#32

I think moving is key, even if it is uncomfortable. If there is a chance of falling, using a cane might be helpful. I have a baby, so I push the stroller and I think that helps me with balance. He needs to go out everyday so I walk at least half hour, but I push myself to walk an hour when I am feeling good. It also helps the headaches and sleep.

I think meds are needed to calm down all the symptoms / feelings (physical and psychological) so we can enter the healing mode via neuroplasticity, and start recognizing the normal feelings.

One thought about the diet, according to heal your headache, something in the diet can be triggers, but not the cause of the migraine. So what we need is to control triggers (diet, stress, sleep, hormones -not sure how to control hormones though, which I think combined with lack of sleep and stress were the triggers for me-, etc), so once symptoms are lessened and we have a good migraine routine, we can reintroduce foods and confirm they are not triggers, and cheat here and there with the ones that are.


#33

Re medication, my new ENT gave me a prescription of Valium to try when it is really bad. I have not had to use it yet since he gave it to me two months ago - Yay! - but will try anything to get rid of that awful feeling.

I used to just stick it out with the same medications and be miserable. Excedrin Extra Strength worked if it was just a really bad headache with no dizziness. At my appointment last year my neurologist said there is no need to suffer. Take something at the first sign of a migraine. I did get more relief once I knew I could take more of everything without having to worry. Now I attack it with any and every medication I have.
If it’s a mild form of dizziness I take a meclizine (Bonine over the counter). Though, I don’t take it as a preventative on a regular basis anymore so my brain can learn to compensate. (Just learned that recently too - seems to be a never-ending learning curve.)

The minute I feel spinny or it feels like a migraine, I try Rizatriptan Benzoate disintegrating tablet first. I can take another one an hour later if that first one didn’t work. If that doesn’t work, then I take Zolmitriptan (Zomig) nasal spray, which I take as a last resort because although it does take away the dizziness and horrible headache, I am completely wiped out for many hours after I take it. As I said I haven’t taken the Valium yet, but I will probably take that before the Zomig next time. Because we all know there will be a next time.

I’ve read some literature/online information about cannabis oil or hemp oil. One article was written by someone in traditional medicine that said because there is no regulation on these oils you don’t know how much you’re getting with each dropper full. Since there is no standard dosage, it is difficult to know how much to start with and what level with work for each patient. Too much and it won’t work and may cause side effects, too little and it doesn’t work at all. I also just heard an interview on the radio that doctors aren’t learning much about marijuana in medical school because it’s still illegal under federal law.


#34

Luckily my doctors have taken the approach that it can’t hurt to try it. My ENT prescribed it, but I’m sure the neurologist would have too. The bigger problem is insurance coverage. I had to pay 30% and a $25 copay. At that point I would do anything to feel better so begrudgingly just paid it. The cost was higher because the therapy office was run by the hospital, not an independent. I picked that one rather than one 20 miles away because it was close to home and I could call a family member to pick me up and bring me home if necessary. Turned out therapy did not make my symptoms bad enough that I could not drive home.


#35

I’ve had good calming effects with one brand of CBD oil but it made me a bit dopey and unusually happy. Later I learned that it had a small amount of THC. When I switched to another CBD oil that had zero THC, I noticed no effect whatsoever. I think MAV people are super sensitive to meds, enough to detect very small amounts of THC and that may be the difference they notice between brands. Apparently cannabis can also cause medication reactions similar to grapefruit juice (CYP3A4 enzyme), so its hard for me to justify taking it when I want to try other meds too. Although a small dose of CBD oil probably doesn’t make a difference.


#36

I live in Washington state where marijuana is legal. A standardized dose of 50 mg CBD with a small amount of residual THC is a regular part of my routine evenings. I don’t get at all high, but it does reduce pain, nausea and anxiety.


#37

No. Don’t give up, no ever. Not til you reach your very last breath. Be yr own advocate. Start the process all over again. I know it’s tedious but if something is affecting your quality of life you must try to remedy it. You must. I’m bit different from you but I suffered increasingly longer totally debilitating acute vertigo bouts for 12 years, just accepting the original diagnosis from a half asleep GP that it was BPPV and
There’s nothing we can do about that’! Then, one day I woke up, stopped believing that and started researching. Three years and alot of medical appointmentd later I got a probable diagnosis, some preventatives and, although not ‘cured’, I’m much improved and it’s still getting better. My first step was to see a neuro-otologist. Try it. Good luck.


#38

Hi Helen…i feel lucky to have the neurologist and ENT i have as they must totaly believe in this diagnonsis as ALL my follow up letters have
Diagnonsis Chronic Vestibular Migraine since 2014
No " possible or probable" so i never question they might be wrong at all
Hope your ok in this HOT weather!:sunglasses:
Jo xxx


#39

Hi Helen, Thank you for the encouraging words. I should look for a Neuro-otologist, I think they are hard to find but it is a good idea. Any doctor is hard to find now, I just moved to another state and most are not taking new patients. One of my biggest problems is me, I am so afraid of all the testing. I found it just torture to have my head hanging off a table and neck jerked, still have neck injury and everybody shouting “eyes open” “eyes open” and after all the “torture” doctors just say well that testing is just inconclusive anyway. Diagnosis: “If it was anything serious it would have killed you by now” by a Neurologist years ago. And by ENT years ago: Diagnosis: “you just have a little balance problem and you’re over reacting to it”. lol. It is all so true, but I could have diagnosed that much. So I just need to give myself a pep talk before battling doctors again. Have a good day! And good luck with everything. Nice to have a place to share and relate.


#40

Hi there
How shocking for 2 professionals to say that to you!!! I really dont know how i would have handled that situation😠 How would u EVER get better relying on specialists like that? Feel so sorry for you.
Jo x