Weird symptoms and looking for advice

squaregirl

Member
Joined
May 19, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
I'm newly diagnosed with Fibromyalgia in April by a Rheumatologist after falling ill with a flu-like illness that was not the flu. Shortly thereafter, I developed weird neurological symptoms that have no known origin related to disease after MRI, EEG, EMG (all normal) and extensive blood panel (low vitamin D, detected ANA, anti-ds DNA detected but not high enough to suggest disease activity Rheumatologist does not suspect Lupus at this time). I was nervous that the following symptoms were related to MS but the neurologist who ordered my MRI is a specialist in MS and told me this problem is functional, the symptoms are the following:

electric shock sensation in head that affects vision (and sometimes hearing) causes a brief episode of blackness like a long blink and then vision comes back (I'm always conscious when it happens and can occur with nystagmus). I get phantom smells like a cigarette burning, only at night time for some reason. Lastly, I get sparks of white, blue, and red in my field of vision on and off through the day like an ocular migraine, but I've never been formally diagnosed for migraine. Has anyone had similar experiences and if so what treatment, if any helped resolve these problems? I am currently on amitriptyline and some of these symptoms have lessened slightly, but not 100%. Any advice is helpful. Thank you!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,508
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Sure sounds like migraine, doesn't it? I wonder why the doctors have not diagnosed it, when those symptoms point so strongly to that.
Of course, the symptoms could be fibro symptoms, but many people with fibro also have migraines.

My advice is to continue (in so far as you want to) to pursue the possibility of migraines, because the medication for that is different and can be very helpful.

And for the fibro, you need to be very pro-active and be your own researcher with your body being the lab, in order to find out what works for you. I have a post at the top of the General forum, that has suggestions for things you can try.

And.....we are here to help and support you. You are welcome here, squaregirl, and are not alone.
 

squaregirl

Member
Joined
May 19, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
@sunkacola my neurologist identified my migraines are related to functional problems and cited that it was difficult to label what kind of migraine I have. That said, I think it is best for me to find a functional medicine doctor that specializes in Fibromyalgia as it seems even the worst of autoimmune disease has reversed or been managed by changes in diet, supplementation, and exercise. I don't foresee any treatment for what could be migraine based on the current prescription of Amitriptyline I was assigned by my rheumatologist, my neurologist began with Notriptyline, but I never took it because I knew migraine was not the main problem. I appreciate your advice and support, I've been struggling for several years now and had a flare recently that made me think I was on my way out of here. Luckily, that is not the case and I get to learn about the weird ways my body works.
 

femfatigued

Member
Joined
May 9, 2021
Messages
25
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@squaregirl Check with the neurologist to see if you have vestibular migraines. I have been diagnosed with that and have a lot of the same things you mentioned. Migraine with aura is something that can go along with that diagnosis, but like fibro, it is hard to diagnose (usually). My neuro diagnosed me on the first visit, but the ENT had already suggested she thought I had it, then I did lots of research before the neuro visit so I had done the work for him. It doesn't always work out that easily though.
 

squaregirl

Member
Joined
May 19, 2021
Messages
15
Reason
DX FIBRO
Diagnosis
04/2021
Country
US
@femfatigued I wish I had a practitioner diagnose me with vestibular migraine. I've mentioned it to a neuro-opthalmologist, a regular neurologist, a general physicians, and an ENT and they all looked at me like was crazy. Since I know mostly neuro-otologist diagnose vestibular migraine, I must search high and low for one as that is not a common specialty. That said, the natural supplementation is much the same for regular migraine and many neurologist say eventually the brain compensates for imbalance. After having a routine neurological exam, I do have mismatch on my right side to vestibular origin. I thought initially my 'migraine' experiences might be related to this, however I think that fibromyalgia might be the underlying problem, in addition to a vestibular issue. It is my understanding most patients find the best success with functional lifestyle changes and some for of meditation...both of which are also suggested for fibro. I think it's best I no longer waste my time searching for a migraine diagnosis as its taken me 3 years to an answer that partially address my brain fog and some what abates my pain. I appreciate your suggestion, I just exhausted and frankly not interested in spending more money for people to look at me and tell me its all in my head.
 
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