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Occipital Neuralgia vs. migraine


Katybug

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My consult with a new rheumy today resulted in one new recommendation  (and a convincing conversation justifying why I don't have a rheumatologic issue and EDS does explain certain aspects I wasn't sure about.)

He said he would like me to explore, with my neurologist, occipital neuralgia as a differential diagnosis to my never ending migraine. He said it is not easy to differentiate because the symptoms are so similar and it's not uncommon in EDS patients.

So, other than the information in the link, does anyone have any familiarity with this or words of wisdom?

http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/nervous_system_disorders/Occipital_Neuralgia_22,OccipitalNeuralgia/

 

Edited by Katybug
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I had Occipital neuralgia after my C1-C2 fusion.  It was not fun.  Mine was intermittent and felt like a zapping, electric feeling with certain neck movements.  It would happen randomly without movement too.  I have never had a migraine so I don't know how to compare the two.

After many injections to try to calm the nerve I consulted with a nutritionist who suggested Lipoic Acid.  That has helped me the most.  I have been pain free for awhile now.  

Hope that helped some.  

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Thanks. I appreciate the feedback and am sorry you had to go through it as it is quite painful.

Mine is more of a chronic, constant throbbing to stabbing pain that waxes and wanes on the pain scale from a 2 to an 8 but never goes away (since August although I had it more intermittently prior to that). I used to not have pain at the base of my skull (which radiates over my head) but I have pretty consistently now for the last few months in addition to pain in my temple, eye, jaw. In reading the link I attached, it looks like you can also have both migraine and occipital neuralgia.  I have a sneaking suspicion I might have both having now read more about the whole thing. 

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I have severe head and eye issues, but in my case they have improved with massive changes to my diet and eating low histamine, low inflammatory foods.

I have read a lot about these head and eye issues and I would suggest you read up a bit about Dr Diana Driscoll who has EDS and did have POTS. She has looked into the head and vagus nerve issues extensively. 

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Hi there -   Are you taking Gabapentin (Neurontin) for migraines? Wondering if  that has that been more effective vs the other migraine medications, such as abortives like Imitrex? If so, you may be onto something w/ the neuralgia, as Gabapentin is quite successful in treating nerve conditions. You might benefit from occipital nerve blocks, not sure if you'd consider something like that or if it's even an option with EDS-- also, topical Lidocaine might be an idea.   Sorry your still struggling with so much pain :( 

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Hi. Thanks for the kind words.

Sarah - the gabapentin nor the amitryptiline helped with preventing the migraines/pain at the base of the skull. I did try a left over hydrocodone last night because the pain at the base of my skull was unbearable and that did give me relief but it's back again today. Now, today, I also have a muscle spasm from the base of my skull where the pain originates and it's running down my neck and along the inner edge of my shoulder blade. But that may be a clue too because muscle impingement on the occipital nerve can be related to this. 

I do feel like I am dealing with both because this morning, it only hurt in my eyes and my right temple. After moving around a bit early afternoon, the pain in the back of my head started separately from the pain in my eye/temple. 

Whatever it is we need to get on it because I have been toast every day for weeks from this pain. 

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Katie - That is so miserable.  My mom has dealt with these symptoms for a long time.  It's her primary, debilitating symptom.  Although her stomach is a close second.  She takes a lot of neurontin for hers and some other heavy stuff.  It's the only thing that takes the edge off, and even then, it's not always effective.  My daughter is closing in on the same thing with the migraines/pain at the base of her skull and up to her eyes/ears/jaw.  We also have been dealing with what we now think are muscle spasms that are impinging nerves.  It seems to be coming from an area high in her neck.  She's got EDS, also, and is very loose in her neck.  She's also really small boned and so she's very fragile.  Her body started going into spasms this weekend (of course).  It started with her shoulders, then went to her arms and hands, then to her legs and feet.  Lastly, it traveled to her face.  It was really scary and we didn't know what was causing them.  I have her PCP's cell number, so I called him and he thought it was an extra pyramidal effect from too much medicine.  I looked it up, seemed to fit.  He told her to take 50 mg of Benadryl every 6-8 hours.  It worked some, but then it kept coming back.  Called him early this afternoon (how many doctors will help you on a Sunday afternoon?) and he said that it couldn't be the medicine.  Not after this length of time.  I told him she could feel it start from her neck.  I already knew that she had a lot of inflammation in her neck, and he used to be an orthopedic surgeon.  So, he said warm compresses and prescribed a muscle relaxer.  The warm compresses helped immediately.  I couldn't believe it.  Her body just all of a sudden stopped shaking.  The muscle relaxer with a Benedryl seems to be relaxing them some.  But, until we get her neck taken care of, I think this is going to be a problem.  I hope your situation doesn't turn into ours.  If it does, heat up a warm rice sock, make sure it is really warm (don't burn your skin, though).  Hope you get some help, soon!:huh:

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in regards to migraines this may be way off. About 5 years ago i went to the mountains for the weekend and notices everyone sounded like they were talking gibberish and then i looked down and saw my notes were scribble, so i went back to the cabin for my o2 monitor and it said my o2 was 72. thought it was  broken till i put it on someone else finger and it said 99. Didn't tell anyone because 8 of us came in the same van. When we came down first person i called was the pulminolagist. between him and the cardiologist saying no it is heart no it is lungs.my pulminolagist ordered a bubble study and then the cardiologist had to do it. even after all the negative echo cardiograms the bubble study showed a large hole in my heart which was quickly repaired. who da known been going to the mountains for 25 years. turned out the blood clots i had had the previous oct. shunted the hole open so it was more easily found. During the heart surgery , yes i was awake for the whole almost 3 hour surgery, i felt the migraine leave. was gone for along time then came back in a different form up to 5 a day. was told those were mixed cluster migraines. well i can tell you e.r.s are useless they always under treat them tried rescue meds. all made me throw up and little help. the topomax was the worst  for abort-ant meds. ..long story i had been on oxygen at night from low o2's at night and chronic aspiration pneumonia.. during a 5 month period where i was one oxygen almost 24/7 i notices my migraines were gone. so i asked the nuerolagist, pain management, PCP, pulminolagist, cardiologist why is this working. all of them said well yes that is standard treatment for cluster migraines.. NO IT IS NOT. NO ONE EVER SAID THE OXYGEN I HAVE HAD IN MY HOME FOR FIVE YEARS COULD TAKE MY MIGRAINES AWAY. Not one. pushed plenty of meds though. i don't know how anyone could even find out if it works for them. When i have been in e.r. and a migraine starts i say put the o2 on 2ltrs. and it may intercepts it. At home the same thing if i see the auro or feel the pain starting i put the o2 on for an hour. i actually have only had 2-3 migraines this last year. it is not the cure all for all types of migraines but for mine it has been a sanity saver and kept away so many meds that seemed worse the the headaches.

Yes i do go to the chiropractor when my neck or back feels tight. he also adjusts my jaw when it locks in place.  all those words to say there is an option no one told me about i found purely by accident.

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Had the bubble study last year....no hole in my heart.

I actually find being on oxygen quite irritating when I have been in the hospital and had it. But it seems like a good suggestion. 

Thanks for telling your story because I do think it will help someone. 

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so glad you have already had the bubble study. Apparently many migraine sufferer have an open hole in the heart. .Who da thought I was almost 50 when it was found. and you are right the oxygen is more than annoying. hate, hate , hate when it is needed. It  is the only thing that stopped them, and now that i know it works' i will do what ever works to stop it and not end up doped up and sick from the meds.

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