Anyone familiar with this type of migraine? I feel so alone.

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Hi all,

Over the last year I've been having some health issues mainly idiopathic autoimmune but I was also diagnosed with Ménière's disease which is an inner ear disorder.

I started having flashes of lights in my eyes which the ophthalmologist said it was ocular migraines but I never had them before. Now, on my right side of my head, I get this burning feeling in a nerve on the back of my scalp (I put ice on it) which makes my right cheek feel numbish in one spot. My eye goes somewhat blurry and I'm very tired and sensitive to light. I also get sharp pain behind my eye if I expose it to too much light; and I get off balance. The top of my neck on that side starts to hurt as well and if I massage it, it feels better. This can last for a week.

I asked my neurologist and she said it's a "vascular migraine" and gave me gabapentin to try. Does anyone else experience this? I feel so alone and I'm getting extremely depressed. Even writing this right now I have my one eye closed. 

If anyone wonders, I've had 2 MRIs of brain with and without contrast in the last 6 months (most recent August) and a CT of brain with and without contrast. Also, have had a full MRI of spine with and without contrast. So I don't think it's anything sinister and my neurologist doesn't seem too concerned.

Any advice? 

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  • Posted

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  • Posted

    ??Wait for the results from the MRI. Information is power, information doesn't always translate into knowledge but at least you have the basic facts in front of you. It is important to be aware of all the treatments available.

    i have had MRI WITH AND WITH OUT contrast and nuecular.

    all MRI the results is on disc.  I always ask for the disc to take to other docs for evaluation, along with the explainations found written in a way we can understand. Ask for the written results to help you wil a better understand and it's better to know than not know. Sometimes we have to be our own advocates for our health conditions.😊

    I am very sorry to hear of the many difficulties you have been suffering from. 

    i don't know your age or male/female doesn't matter, really.😊

    Stay with us keep posting . 🎄

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    • Posted

      Thanks but I have the results. My last one was in August. They're all clear. I've had 2 MRI, 1 CT, and 1 MRI of entire spine. 

      I agree with you about being our own advocates. I really am mine, that's for sure! 

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    • Posted

      Im 29, female, btw. I think my name throws people off lol
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    • Posted

      Too young to have so many issues. Stress can make us ill and worse. Hope you have many ways to find your center and meditate to relax. 

      Oh your gonna laugh. I have a migraine helmet that is designed to help migraines. I got it for x-mas last year. It really works. Has calm cooling light and pressure message, soft music and blocks out all the outside noses. It sound crazy but can helps a lot. See on line for more info. 

      Gabapentin gives me a migraine it makes it worse. That's just my reaction. I seem to be sensitive to many medications. 

      Hopexxxx😊

       

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    • Posted

      Maybe you should patent those! Lol I didn't know they existed. I'll look online.

      I haven't tried it yet because I'm sensitive to them too! Ugh

      Thanks for all of the advice!

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  • Posted

    I made a lengthy reply to this post yesterday and it was deleted by moderators.  I have read the terms and conditions but couldn't find anything relevant to my post, so I have no idea why it was deleted.  I had similar symptoms to you OP, but not all the same. 

    I wish there was a way to contact you privately but I don't think they do PM's on here.

    I hope you get some relief soon.

     

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  • Posted

    It sounds like others within this discussion may be closer to fully understanding your situation, however I will share what I can.  Had a Hemiplegic Migraine in August.  I never had a migraine in my life, and then from out of the blue, I suffered the mac daddy of them.  HM mimac a stroke.  My situation was complicated by the fact the ER and neuroligst (saw him 3 times), had MRIs of my head (w and w/out contrast) and x-rays missed that my C1/C2 in my neck was out of alignment and I was still suffering neck pain, weird sensations, vertigo, confussion, vision issues, and acute constant tension headaches that were on borderline migraines for 58 days. I said to him 'something is majorily wrong'.  Over a weekend, I went to a urgent care and they took an x-ray of my neck and upper back, which included multiple views from the front of my head/throat with my mouth open.  BINGO - my C1/C2 where your head is mounted to your neck was out of alignment.   I had been attending some of the best hospitals in this major city and they missed it.  I dropped the neuroligst and have a fabulous neck and spine dr., I've been PT for 2 months and will be in for another 1-2 months.  My neck/spine dr., had a discussion with my neurolgist and they both were so, so surprised of how this all unfolded.  I credit myself with being a very intutative, savvy patient and navigated the medical community with this strange occurance.  Once my c1/c2 was corrected - it was crazy the muscle spams I had - in my shoulders, neck, head, forehead - even my nose!  The spams lasted 6 weeks  and I was in muscle therapy almost daily for 3 weeks.  While all that was painful in itself.  ALL MY SYMPTOMS WENT AWAY.  Talk with your drs., and ensure they do an neck and head evaluation to ensure you are in alignment.  PS - stay away from a chiropractor.  I worked with my neck/spine dr and my PT for correcting my neck.  Best wishes - it can be very scary, especially when the medical community doesn't know what is wrong with you.

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    • Posted

      Oh wow thank you! It honestly hurts to turn my head to the left its so sore on the back of my neck. That seems to be where that nerve low. I asked about occipital neuralgia but she told me no. Im constantly using heat and rubbing my neck and shoulders trying to loosen whatever is going on. It makes my jaw tight and everything! If I push in a few spots back there, all the tension goes away and it's like instant relief. 

      Thats crazy your MRI missed it! I was told by a physical therapist tho that x-rays only pick up stuff out of alignment like that. I'm glad you figured it out! I'm definitely going to keep it in mind. I feel like my neuro thinks I'm crazy at this point. Bless the doctor that was smart enough to do that x-Ray on you! 

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    • Posted

      I believe the MRI is more soft tissue focused. The MRI and x-ray of my head may not have included right at the base of my skull as it attaches to the Neck, where the C1-C5 vertebrae, the C5 then connects to the spinal vertebrae.  I too had limited mobility in my neck.  My PT measured that when I turned my neck to the right, I could only turn it 10 degrees, normally it should be 45-55 degrees.  When I turned my neck to the left, I was 25 degrees.  My c1/c2 got out of alignment from my overall poor posture - working on a computer, phone, and was compounded by my soft saggy bed.  My neck overnight just snapped out of alignment.  I woke up that morning with bad neck and shoulder pain and a headache.  I got to moving around, getting on with my day, took the dogs for a walk.  After grocery shopping, I loaded my bags into the car - and I felt really weird, and had a hemiplegic migraine and landed in the ER.  Your mention of the jaw tight is a classic symptom of neck issues, along with a long laundry list of others.  I was just at my neck dr, for a follow up and while I did not have jaw issues, he was telling me what he listens to from his patients, and he mentioned this along with others, lets him know it more in the neck than the spine.  Those spots you mention are those nerves and muslces that can sit on the migraine and headache paths.  My neurologist (high-regarded) could not see past this be neurological (brain), but once I got to a neck/spine dr., he mentioned his neck patients are migraine and headache sufferers.  You can either cause a headache by pushing on those, or in your case, find relief.  I had a bit of both given the hour or day of how I was feeling b/4 my neck was corrected.  I'm wondering if you may (also) have an impignment somewhere along the c1-c5.  Heat and massage therapy were my saviors once my neck was correct - granted, my PT and massage therapist had to be very careful as again the wrong amount of pressue and they could trigger a headache/migraine, but needed to calm and rest everything down and back to normal.  Today my PT continues to lenghten stretch my neck from any compressions and does massage trigger to calm everything down.  are you posssibly in the US?   I'm in Illinois

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    • Posted

      I'm in Pennsylvania, actually. What tests do you recommend I should have that you did as well? The x-ray with mouth open?

      I know you're not a doctor but I appreciate your advice and it's worth a try at this point!

      Like even right now, my jaw is so tight that it gets hard to speak. I was told a few years ago by my dentist that I grind my teeth but I haven't noticed me doing it lately so I don't think that's it. And I have Ménière's disease which is an inner ear disease so I sit with my head cocked to the left a lot. I do it out of habit because of the vertigo it gives me. I know that can't be good for it.

      In general, I wake up with a headache in the morning at least 3-4 days a week from my neck/base of my skull hurting. So I'm willing to give things a try. I'm quite sick of them.

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    • Posted

      Hi, good to hear you that you are in PA - as you can at least get to a big city hospital if/as needed. It may be worth also following up with a dr,. as Temporomandibular joint (TMJ) could be the jaw issue if they find your neck is okay/aligned.  Given the muscle-sketetal issues in the neck/base of your skull coupled with the Ménière's disease, you may find best help and diagnosis with a neck/spine (non-operative) orthopedist. A good one can literally place their hands on the jaw, back of the skull and neck and feel around.  Mine saw right away my issue.  As for the x-ray b/c I was in so much pain and didn't want to wait my appt. to roll around, I found an Urgent Care - the good ones that are affiliated with a hospital.  I called up and ask if they performed x-rays and had a Radiogist who could read it.  In my appt, I complained of my neck/base of skull pain, and that I had limited mobility and it was crunchy when I turned.  He order the radiologist to do 4-8 x-rays.  I stood and held 7lb bags of sand in each hand down at my sides.  they took a neck x-ray looking for the c1-c5 vertebrae separation, from front, side and back of neck.  The bag were then removed and repeated the x-rays and then 1 from a front view with my mouth open.  The radiolgst and dr conferred and they read me the results, gave me a copy and I shared this with my neck dr.  He was also able to feel my neck and literally see the cocked head/neck while we talked.  Best wishes and I hope for you a resolution.  On another note, for the Ménière's disease - have you ever done Physical Therapy for it?  They may be able to help with your balance - and give you tips and tricks for mitigating the effects of vertigo.  I learn a ton with my PT, aside from the stretching, neck streghthing, etc. he helped me with balance, concentration, focus, and staving off tension headaches, deep breathing methods.  I used ever one of those techiniques while I was going through the difficult time during my neck correction, massage theraphy (painful). Now things are turning back to normal for me I do not need them as much, but use them when I need.

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    • Posted

      I asked my dentist about TMJ and all he said was there's nothing they can do for it. So I was like "okay then? Thanks for all the help" (sarcasm lol).

      Actually, in doing my vestibular exercises I have to turn my head back and forth. I, too, hear a crunching noise when I turn my neck. It's when I turn my neck to the left and I've told my PT about it but it was disregarded. I'm sure she didn't do it to be mean but because it probably doesn't seem like a big deal.

      I've never heard of the bags of sand, that's actually really clever. I already feel like my shoulders are bags of sand as they feel weighed down all the time.

      Thank you so much for all of your help, I really do appreciate it. I'll talk to my PT but she's pretty young so I'm not sure what advice she'll be able to offer me but it's worth a shot.

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  • Posted

    Dear Hayhue

    You have my sympathy, I know how having a headache for so long can be devastating. After 16 months I have been diagnosed with cervicogenic headache, like your good self, after many different treatments, tablets, procedures etc etc I am now haivng migraine botox treatment, I have only had one so far but my balance is definetly getting better, I still continue to have a daily dull headache on the right side of my head and a 'come and go' earache but I do feel that the treatment and tablets and regular visits to my chiroptractor have been very helpful. 

    Hang on in there, best wishes 

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