I feel angry when I try to look for success stories to make myself feel better but then see that the person recovered from just diet or just therapy and no medications. I know everyone is different but it makes me feel like I’m not good enough or maybe there’s something else wrong with me :(( Just need to vent!!!
Vent away @annae00 Your time will come!
Hi Annae,
First of all, there’s absolutely nothing wrong with you!
I know how you’re feeling. It’s so hard navigating the beast we call VM. I could be wrong, but from reading stories on this platform & following individuals with VM on social media, the majority of us do require medication. Lots of us require a “treatment pie” to VM, mine includes medication, diet, supplements & so on & I’m still not bloody symptom free
I understand your frustration as I feel exactly as you do at times when reading success stories. Something I have also learnt from others is that VM is not linear & all the people who have shared their success stories have also gone through dark times.
As @turnitaround said our time will come Annae
Definitely not everyone has the same type of VM. It is much stronger for some people and more manageable for others. However, maybe a very small percentage doesn’t need medication. My doctor said that VM can resolve itself but also can become chronic, so better not to take the risk.
Hi, @annae00 . I know how you feel, and I’m one of the “success stories”. 6 months into VM, I got a diagnosis, and was prescribed duloxetine. After freaking out about the SNRI for 6 weeks, I started the Rx, and within a month or so, I could tell it was working well. After the first few months of treatment, I stopped reporting on my mvertigo timeline specifically b/c I was doing so much better. At 9 months, at the start of allergy season, my symptoms returned – not all the way, but enough that I was experiencing despair again. So, 2 weeks ago, I increased my dosage (w/out the neuro’s input b/c I don’t have time right now), and after another 10 days, I’m back to feeling significantly better.
The improvement didn’t happen without prescription meds. I am lucky that the first Rx turned out to do a good job! I’m now fearful that I’ll need to keep increasing every year in order to be functional. And I still feel guilty that I feel any improvement at all.
VM is a pretty f*cked up condition.
It definitely varies individually. I hope you keep trying. And you are very much NOT ALONE.
vestibular migraine is definitely not one disease with one distinct mechanism. We’re all suffering from a basket of different fundamental disorders that converge their way down to the same syndrome with migrainous features.
also i have found that its very rare to recover from just diet or therapy and no medications. if it happens, good for you, but this is far outside of the norm, or even the expected distribution of outcomes.
Hi there,
I haven’t posted in a long time but just wanted to tell you that I was very sick for over a year (had to stop working and take time off from my master’s degree).
I saw several different neurologists - even went out to see Dr Hain in Chicago. I tried a number of different medications… the process of tapering up medication doses, waiting a number of weeks to see if symptoms improved, then having to slowly wean off failed meds was really tough.
I can tell you Dr Hain was fantastic and my local neurologist back in the Philadelphia-area was such a wonderful doc as well. My Philly neuro relocated to another area in the country but he is by far one of the best docs I’ve ever been in the care of. He was very open to any consults/ feedback from other docs and was very amenable to trying what Hain recommended.
After seeing Hain and going very slowly up on the meds he recommended (and I mean snail-like pace because I was so anxious about this whole process and potentially failing another med)… I finally started feeling better (took about a month or two after starting Hain’s regimen).
I completely understand the frustration with reading other success stories and that feeling like there’s little control over your own recovery. It’s horrible, unfair, lonely, and frankly just sheer shit to have an illness like this. What you are feeling is totally valid.
I can tell you I battled through those dark times and didn’t think that there was any relief in sight. I really believe there will be a treatment that works for you. Unfortunately there isn’t a ton of research in this area (with classic migraine symptoms, yes) but the atypical symptoms don’t get the attention that other diseases do. I hope and pray that in the future that changes significantly.
In the meantime my heart goes out to you and I hope you are able to get some relief soon. If you have any specific questions please feel free to PM me and know that there are so many people on this forum that are pulling for you and are incredibly supportive.
Ironically this is turning into a Success Stories & Positivity Topic. If there are any more I’ll move it there, lol
@annae00 the Success Stories are in great part meant to give you hope that it is possible to recover however desperate it currently appears - would you feel better if we deleted them?
Hi!
I can totally relate with how you feel. I seem to have a lot of visual symptoms (trouble focusing, weighted pressure feeling etc.), and feel so discouraged by it, particularly when others don’t seem to have those same symptoms.
Being positive is almost a separate battle itself!
Best
Lotte
How did you come to that conclusion?
Hmm, that is a thought provoking question! The answer is probably from listening to other people’s experience which itself might not be entirely accurate/only capture snippets.
If I’m being truthful, I think it probably stems from anxiety for me - the idea that one of the most difficult symptoms for me to manage is not shared among the majority, and so there’s no hope! Logic is clearly flawed, but it’s difficult not to listen to that voice when it’s loud
Best
Lotte
We compiled a list of all members symptoms a while back. If you’ve not seen it I suggest you take a look.
You are certainly not atypical.
Oh wow, thanks James!
I hadn’t noticed that post (which is surprising as I’ve been reading aka listening to a fair amount!).
Best
Lotte
Yes I am happy for people whose chronic migraine disappeared just with magnesium or eliminating caffeine, but also know that my migraine laughs in the face of such tales.
Several medications, multiple types and modalities of therapy, and six years later, I am indeed largely recovered, or at least have excellent symptom control. Everyone’s brain is different and so is the context in which each person’s symptoms appeared. With such a poorly understood condition, it’s not a surprise to me that there is so much variance between recovery paths.
A model that seems useful to me is that medication serves as a bandaid over the wound that is your chronic migraine/vestibular migraine, allowing it to heal and providing some protection against the constant stimuli that are constantly exacerbating it. Everyone’s wound is different in size and severity, so each person’s treatment needs will differ also.
Definitely nothing wrong with you! Just keep taking steps toward the treatment that will help you the most.
I think that’s probably the tiny minority.
I get the impression that most people on this board end up using some medication to support their recovery.
EDIT: actually forget “impressions”, let’s back this up with data:
So only 10% “coping” without medication (with some others choosing not to take medication come hell or high water, but not necessarily “coping”)
Also another survey of Usercards:
I’m coming into this thread late, but you’ve hit on something important—the depression and anxiety that come along with a difficult condition like VM/chronic migraine can be devastating.
I’m far from the first person to say this, but it can be enormously helpful to address the mental-health effects separately from your physiological symptoms. If you can access therapy (someone who specializes in chronic illness ideally) this can really take the pressure off and allow you to face the physiological/physical side with a clearer and less tormented mind.
When i was struggling at my worst I got upset by the success stories. I’ve lived with VM for 14 years and was scared it would never get better and reading about people who got better from the first drug they tried or just from diet etc did make me feel really upset. But you’ve got to remember that everyone is different and those with an easier route to treatment are probably more likely to post success than those with a longer more difficult route. I used to get upset reading about people who could still work despite their symptoms while i was bedbound. Vestibular migraine is a spectrum and some people will feel worse thsn others and some will find relief faster than others. I tried five meds before i found one that worked, and that caused side effects. I believe everyone can find treatment that works for them eventually. But i did used to feel even more depressed reading about those who got better from things I’d already tried and failed. The forums are intended to help and there is a lot of support here but there are also posts that made me feel worse rather than helping, so i think we all need to be mindful of that when we come here for help.