Neurologist?

[vergil96]

How helpful do you think it would be to visit a neurologist regarding oversensitivities? I have migraines and I'm not sure if they don't contribute. My auras become more pronounced, patches of my skin go numb during some auras, it's worrying. There are the oversensitivities that make it painful to go anywhere at certain times. Maybe it's something different than migraines? I'm not a doctor, I don't know. I have done everything that could be done about migraines already. I had an MRI before due to aura (ear ringing), nothing showed up.

 

[Baiwuxiang]

I don't think it would hurt 2, especially if it happens often and you're worried. If it's an option, I would advise going to see a neurologist who specializes in the type of migraines you have. They might see something the others missed.
Regardless I wish you the best of luck with them.

 

[Xinyta]

This does sound like you have some kind of disruption in brain signals. Namely in the ones that run specific parts of your nervous system.

I would definitely suggest going to a neurologist who knows what this phenomenon is.

 

[Neonatal RRT]

I would advise going to see a neurologist who specializes in the type of migraines you have.

^^This^^

My wife has been a migraine sufferer her entire life and is under the care of a neurologist who specializes in migraines. In fact, there's an entire group of them together in an outpatient clinic. They even have special patient rooms for those that can't get the migraine to "break" with their home meds and will do IV medications in the clinic. Call up, walk in on a moment's notice.

The migraine-associated tinnitus is common enough. My wife has it, as well.

 

[vergil96]

I think I'm going to give it a try and sign up for the queue

 

[MC1Rcat]

I think it would be an excellent idea to get a complete neurological workup, blood test and DNA screening for neurological issues. I have had "silent" or vestibular migraine for over 15 years and have a lot of weird neurological symptoms when I get migraine attacks. I rarely get headaches, but get tachycardia, numbness in face, scalp, arm and leg on the left side; ataxia, slurred speech, cognitive problems, non-epileptic seizure, fatigue & other stroke like symptoms. I also have severe dizziness, nausea and problems with my left ear, like ear pain, swelling, tinnitus and intermittent hearing loss. The severity of these symptoms is reduced by taking a preventative medication for migraine (Nadolol) daily. But, it does not keep me from getting attacks, and I get triggered very easily. My migraine specialists over the years have said that some of these symptoms are not typical silent migraine, but they did not check me for other neurological problems because my MRIs were pretty normal and I seemed to be pretty functional on the Nadolol. So I just chalked it all up to the migraines, even though a lot of it was not typical and pretty scary. But, as I am getting older, the silent migraines seem to be getting triggered more frequently/ easily.

Then 3 years ago I started having problems with orthostatic hypotension on a daily basis. I was diagnosed with dysautonomia with a tilt table test. Because I have comorbidities that are due to autonomic nervous system problems like, IBS, silent acid reflux, migraine, neuropathy and mitral valve prolapse, I was given DNA and blood tests to determine if I had a neurological disease causing the dysautonomia. I found out that I have mild Fabry disease, which could be the reason for the dysautonomia, and the ear problems....maybe not, the dysautonomia could be independent. Some symptoms are similar. I have also noticed that when I am having flare ups of the dysautonomia, I get more silent migraine symptoms and headaches as well, either at the same time or the day after. This has made me wonder if some of the symptoms that I have been attributing to the migraines are really just from the dysautonomia. It is hard to untangle.

My point is that there could be more than one thing going on with you neurologically, and that could explain some of your weird symptoms. If you do have another neurological issue, it could be triggering your migraines, and vice versa. Also, some treatments used for other neurological issues could possibly help the migraines as well. For example: the Nadolol that I have been taking for the migraines is also helpful for the dysautonomia. Good luck!

 

[Bobsterkitty]

I've been in a similar boat, and I wish you well.

Seeing a headache specialist for migraine is key, as well as finding a benign way (benign to you, not worse for side effects) to prevent attacks. What has helped me all falls pretty much into lifestyle - food, removal of things toxic to me, sleep, my Goldilocks environment, heavy stress reduction, withdrawal from toxic people and topics, and navigating any hormones, including serotonin/melatonin - rather than any Rx drug-based prevention. If you have no tests such as MRI, EEG, or bloodwork, that is a decent start to determine a baseline and possibly find dormant viruses. I see you got most of this done.

For migraine attacks that I cannot prevent, I use triptan/ondansetron. I went from attacks every 3 days to 6 per year, and thanks to the prodrome (ability to smell much smaller amounts of substances, etc., and yes, I feel bad for dogs), I can take one pill each and never get those nasty headaches anymore.

Please don't assume a neurologist will understand autism for what it is, nor stay at least neutral and admit to not knowing when they are clueless. I have seen double-boarded neurologists/psychiatrists who could not for the life of them see that I was clearly autistic, and they ended up damaging me further and wasting precious time during which I could have tended to my well-being in other ways. If you do disclose, many typical physicians will start subconsciously mistreating you, regardless of what you said and what they thought and tested before your disclosure.

Overall, I feel my well-being is based on my trial and error. Having a doctorate and other advanced degrees and being accurate and specific in my language has helped me to assemble physicians who trust my self-knowledge, respect my conclusions, even learn (!), and take on a supportive consulting role, so long as it is within their professional ethics and oath. I had my worst-ever burnout around the time of diagnosis and lost a lot of NT life features at that time. It took me over a year to admit to myself that I CANNOT live a masked, pseudo-neurotypical life anymore unless I am okay with burning out again, possibly for longer and worse, and losing what high-level skills I have. That is, trying to get rid of pain and symptoms but abusing your neurology in other ways by way of physicians who don't know enough not to be harmful will likely not work.

Lastly, I noticed you use the term "oversensitivities". Hm. There is no such thing. You are more sensitive than allistics, and hyposensitive autistics. You would not call a healthy dog oversensitive regarding their ability to smell stuff. Or a raccoon that does a lot through touch. You are normal for who you are.

 

[Rachie]

I see a neurologist and am diagnosed autism and have moderate tested needs for sensory. It seems it times it might go higher as well.

Leaving for this for sometime I think it may come down to them not accepting you unless you can feel pain.
I could be totally off base but those are just my thoughts.

I wil say now I see a neurologist at Imperial under their neurology department. Now on their website they see certain conditions do you see justifing any of these conditions Perhaps another hospital may see different people. Now I have diagnosed with a moving part disorder and perhaps I even wrong about the pain.

• stroke/transient ischaemic attack (TIA)
• multiple sclerosis (MS)
• movement disorders including Parkinson’s disease
• epilepsy, including complex epilepsy
• cognition and memory including dementia and Alzheimer's disease
• acquired brain injury
• headache/migraine
• neuromuscular disease
• peripheral nerve disease
• neurogenetics
• neuro-infection
• neuro-ophthalmology
• neuro-otology
• neuro-oncology
• neuro-rehab

This is the link to their website and I even think I may discharged soon by what they have writen and said to me.
Neurology

 

[Rachie]

Ok morning time where I live and stared at the list and seen that headache/migraine is under my team. A possibility.....how long what can they do perhaps offer medications bloods but a GP can be switched back to soon if it to do that. Did you have a MRI scan of the head? How long describe. Any pressing pain? That is how I think of when something affects my head and more.

 

[vergil96]

I rarely get headaches, but get tachycardia, numbness in face, scalp, arm and leg on the left side; ataxia, slurred speech, cognitive problems, non-epileptic seizure, fatigue & other stroke like symptoms. I also have severe dizziness, nausea and problems with my left ear, like ear pain, swelling, tinnitus and intermittent hearing loss.

Sounds familiar. I get the worse symptoms with a headache at the same time or afterwards. By worse symptoms I mean tinnitus, light flashes and zigzags, numbness in certain body parts. Also swelling of the back of the neck, eye, ear and other areas of the head. At the same time, I become oversensitive to light, sounds, smells, my skin is painful to touch, I have nausea etc. and this set of symptoms can last longer and can appear without a headache from fatigue, and this is what I suspect to be a chronic low-grade migraine that I really want to treat. Because the sharper attacks are rare enough for me to shrug them off. The latter really decrease my quality of life.

Addressing the cardiovascular or neurological reasons seems like a good idea (Nadolol). I probably shouldn't take triptans and I do take ibuprofen occasionally and it helps with the sharp attacks, but not with the chronic ones. That's why I ask, because if all I'm going to hear is "NSAIDs or triptans! Nothing else you're going to get here!", it doesn't make any sense to lose money and time on such poor advice. It has happened to me with doctors previously unfortunately.

Going for walks or other forms of moderate exercise helps and avoiding dietary triggers, but it's as much as I'm able to do.

Seizure? Geez, I didn't know migraines can cause them.

But, as I am getting older, the silent migraines seem to be getting triggered more frequently/ easily.

I had migraines very rarely when I was younger.

I was given DNA and blood tests to determine if I had a neurological disease

So more thorough testing.

I went from attacks every 3 days to 6 per year,

I'm glad the treatment has helped you so much! Migraine every 3 days sounds like a nightmare!

Lastly, I noticed you use the term "oversensitivities". Hm. There is no such thing.

Well, I mean that they make it "painful to exist". Everything is too harsh and feels like it's attacking my nervous system. It's limiting to live like that, that when I leave my flat, everything feels too harsh.

But it's a fair point! Different sensitivity than most doesn't mean "too much".

I wil say now I see a neurologist at Imperial under their neurology department. Now on their website they see certain conditions do you see justifing any of these conditions Perhaps another hospital may see different people. Now I have diagnosed with a moving part disorder and perhaps I even wrong about the pain.

• stroke/transient ischaemic attack (TIA)
• multiple sclerosis (MS)
• movement disorders including Parkinson’s disease
• epilepsy, including complex epilepsy
• cognition and memory including dementia and Alzheimer's disease
• acquired brain injury
• headache/migraine
• neuromuscular disease
• peripheral nerve disease
• neurogenetics
• neuro-infection
• neuro-ophthalmology
• neuro-otology
• neuro-oncology
• neuro-rehab

Out of those, I see chronic migraines as the most likely. And all the poorly known genetic conditions. I don't think anyone can know what they are without more extensive testing for specific causes.

Thank you all for exhaustive responses!

 

[WhitewaterWoman]

Overall, I feel my well-being is based on my trial and error. Having a doctorate and other advanced degrees and being accurate and specific in my language has helped me to assemble physicians who trust my self-knowledge, respect my conclusions, even learn (!), and take on a supportive consulting role, so long as it is within their professional ethics and oath.

This is my experience as well, starting about 30 years ago.

 

[Rachie]

Out of those, I see chronic migraines as the most likely. And all the poorly known genetic conditions. I don't think anyone can know what they are without more extensive testing for specific causes.

Thank you all for exhaustive responses!

I was initally sent for an MRI Spine scan and also a MRI head scan back in 2021 at first.

This time I have also been sent for an MRI spinal scan and had that last Friday 2025. They only removed was probably no head stuff I cannot remember saying that complaint to my consultant this time of the mention of headaches and I was referred for the MRI Spinal, but something seemingly was reported on the report from my first report in 21-- sensory I am sweeping that aside. My guess headache migrane would be in the head.

My strongest complaint most recent this is my spinal issues something was before a few things but waiting this time seemingly for it to pop. Such strange wording wording on the report to like node and contraction or swelling it is all double dutch to me as well lol.

I know you are under 30 just a few decades seen post and I don't support the assumption don't bother with young people so and I see hoping something come up. They done it to my brother his GP told to go away and eat a chocolate bar with numerous complaints of headache. It is out of order. I wish you the best with whatever you do.

Where does migraine pain originate head MRI on google whatever is your complaint. I am going to later search these key words.

I haven't looked myself as I have barely times it breathes at times it seems but I will do after I reply to you. I will certainly be searching for this trying google who knows if AI will show up but web address is certainly google lol.

....
ok I had a peak in the AI whoever they are is this using google on web address.

Gray matter changes:
Migraine sufferers may exhibit alterations in gray matter density in certain areas like the frontal and temporal lobes, cingulate cortex, and periaqueductal gray, which could be related to migraine susceptibility.
Grey gray matter is the head I know this. This is one of the two scans I done wording for MRI of my Head.

 

[MC1Rcat]

At the same time, I become oversensitive to light, sounds, smells, my skin is painful to touch, I have nausea etc. and this set of symptoms can last longer and can appear without a headache from fatigue, and this is what I suspect to be a chronic low-grade migraine that I really want to treat. Because the sharper attacks are rare enough for me to shrug them off. The latter really decrease my quality of life.

Addressing the cardiovascular or neurological reasons seems like a good idea (Nadolol). I probably shouldn't take triptans and I do take ibuprofen occasionally and it helps with the sharp attacks, but not with the chronic ones. That's why I ask, because if all I'm going to hear is "NSAIDs or triptans! Nothing else you're going to get here!", it doesn't make any sense to lose money and time on such poor advice. It has happened to me with doctors previously unfortunately.

From your description, I agree that you may be right about having chronic migraine. It is similar to what I experience, and I have diagnosis of "chronic vestibular migraine" or "intractible migraine/ variants of migraine", (because I only sometimes get bad headaches and have the non-painful symptoms at varying intensity, at least a few times a week). The non-painful symptoms of dizziness, nausea, numbness in face and head, neck pain, brain fog, fatigue, sensitivity to light, sound and smell are all considered a typical "silent" migraine. It can last for hours, days, weeks, or months. It does not need to be painful to be considered a migraine, and over time, the type of migraines a person gets can change. Since I have the "silent" type with vestibular issues often, I take preventative medicine daily. Have any of your doctors suggested a preventative? There are CGRP inhibitors specifically for migraines, as well as several classes of drugs used off label for prevention, when lifestyle, diet and exercise are not helping enough. I have tried several medicines and the Nadolol is the only one that helps me. I had to find neurologists who specialize in migraines in order to get the help I needed. It seems like you may need a specialist, if the only options your doctor is offering you are NSAIDs and triptans. I was told not to take NSAIDs more than twice a week, otherwise a rebound migraine could result. They do help me with the painful migraines and my old migraine specialist said they are a good abortive for vestibular migraine. But, I get the vestibular type often, and cannot use NSAIDs all the time... so I just don't take them unless I have pain. I have never tried triptans. My old migraine dr said they didn't help with vestibular migraine, but my current dr just gave me a prescription for some. What is your experience with them? Do they help you? My dr also is trying to convince me to try Botox injections, since I have tried all of the other preventative medicines that I could try up to this point, and the Nadolol isn't able to help me as much, now that the dysautonomia is setting the migraine off all of the time.

Here are some medicines used for preventative daily use, usually low dose, for raising migraine trigger threshold and preventing big ones, as well as reducing the chronic "silent" stuff. The Nadolol worked really well for me for many years, and it still helps me a lot. When I stop taking it, I am literally bed bound 24/7 and dysfunctional. It makes a huge difference.

CGRP inhibitors- Quilipta, Nurtec
These 2 are the only ones I know of that can be used orally on a daily basis as a preventative. There is also a shot called Emgality. This class of drugs are also used as migraine abortives, like you would use a triptan. The dr told me they have a low side effect profile. You may need to try more than one to see if they work for you. I have a friend who tried 4, and only the Emgality helps her, and she rarely gets a migraine now. She has had zero side effects.

Off Label options that have been used as migraine preventatives for many years:

Beta blockers- Nadolol, Propanolol, Metoprolol
I tried all 3 of these, only Nadolol helps me, even though they are all similar. They affect the heart rate more than the blood pressure. These beta blockers have a lower side effect profile than the drugs listed below. The ones listed below can have side effects that are intolerable for some people, and are fine for other people. Unfortunately, a person may have to try a lot of drugs before finding something that helps. The dosages of all of these drugs are much lower for migraine prevention than what is used for depression or seizure treatment.

Anti seizure- Topomax
Anti depressants - Zoloft, Effexor, Nortryptyline, Amytriptyline

There are also alternative therapies that some migraine specialists do: trigger point injections, acupuncture, Botox. You can also try supplements, Magnesium glycinate and Riboflavin (B2). They didn't work for me. I think it is because I did not have a deficiency in them.

I think a migraine preventative medicine might help you a lot. If I were you, I would also still get a full neurological workup, with blood and DNA testing... because the numbness in parts of the body other than the face, head, neck area is not typical of silent migraine, and the skin being painful is also not typical. Those sound like symptoms that I get which, in my case, are neuropathy associated with both my dysautonomia and Fabry.

Also, there is a great blog/ newsletter that I have been reading for years about migraine and preventative treatments, as well as new scientific discoveries, etc. This blog has tons of info. You might be interested.
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