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Friday I saw my doctor and asked him about the throbbing pain I get at the base of my head and the weird tingling (pins-and-needles) in my scalp. I have had chronic neck/shoulder pain since the beginning of POTS and have mentioned these other throbbing and tingling sensations to several doctors in the past but no one offered an opinion. ANYway, my current doctor informs me that I have "occipital neuralgia". He doesn't think it is due to POTS but then again I never had these symptoms before POTS so who knows. The chronic neck/shoulder pain may be a trigger. Rest, heat, and massage were his suggestions which I had instinctively been doing anyway.

I post this because the topic of weird head sensations/tinglings has come up before and someone asked me what mine was from but at the time I didn't know. NOW I do so thought I would share with ya!

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Hi Geneva,

I've never heard of this term before (occipital neuralgia). Did the doc offer any ideas as to what causes it, besides the neck, shoulder pain? I frequently get pain in the back of my head with very tender areas on my scalp that are super sensitive to the touch. I dont get the pins and needles feeling though. These areas hurt worse if I cough or strain. I wonder if it's similar to what you have? I've never had them before getting POTS. They aren't there all of the time, but often.

I too get a lot of neck and shoulder pain. My MRI did not show any signs of stenosis or chiara in my neck.

Glad you posted about this...I'll have to do more research.

Gena

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:( Geneva,

My wife, Christine, has scalp pain, pins and needles, and pressure. The neurologoist who saw her recently described it as a Post Traumatic Neuralgia. I had read up on Post Occipiatal Neuralgia, but discounted it as she had no pain behind her eye.

The pain management specialist put her on Topamax to see if it will calm down some of the nerves. We'll have a better idea in a month if it's helping.

Frank

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Hi everyone,

There is a nerve between the back of the scalp and skull called the "greater occipital nerve". It can be irritated by trauma to the head or neck. However, sometimes it is irritated for no reason at all. POTS would not have anything to do with it. When this nerve is irritated, it is called "greater occipital neuralgia" or simply, occipital neuralgia. It is not serious, but rather painful. It is not super uncommon. It causes pain at the back of the scalp near the neck. It can trigger headaches too.

The nerve can be calmed with medication or even trigger point injections.

Hope this helps and that topamax helps. Topamax has a side effect of weight loss, ooooh darn!

Karyn

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Occipital neuralgia could very possibly be relieved thru chiropractic treatments. Be sure to find a thorough, established chiropractor who will give you x-rays before treating you, and then will show you the x-rays and discuss treatment with you.

I have a terrific chiro who has been a tremendous help to me with headaches, backaches, shoulder and chest pain and more over the past 7 years or so. He is always honest with me about whether he can address each of my issues and is interested in my overall health progress, not just from a chiropractic viewpoint.

Best wishes to you - I hope you can find a chiro as terrific as mine!

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Geneva,

I'm a massage therapist and know a fair amount about occipital neuralgia. The massage usually helps because when the muscles in your head and neck spasm and become tight, they put pressure on the nearby nerves, causing tingling, numbness, pain, etc. Stretching is particularly helpful -- especially those stretches that are done by a therapist. Try and find someone who is experienced in neuromuscular or trigger point therapy.

Good luck,

Amy

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Kayrn, it is nice to have someone with your training on the forum. Welcome and thanks for sharing!

Amy, I agree about the massage therapist. I do have a really good person (thankfully). She even makes house calls when I am having especially bad pain (like this last Monday when I woke with severe pain in my shoulder). I have been with her for 2 years and she is great. She stretches the neck area and I also have been doing yoga stretches for a year now. The only thing is that if I miss going regularly to massage, I have really bad problems with my neck and shoulders. No amount of stretching on my own accomplishes the same thing. I have a real appreciation for massage therapists!

I think what astonished me most was that my doctor actually gave me a name for the problem I have had off and on since POTS 4+ years. I have described the scalp pain before and just gotten funny looks.

Gena, your description is similar to my pain. I get the scalp tenderness and pain and cannot even run my fingers in my hair without pain. Just to touch that area of my head is really painful. This sensation has baffled me for years as I had not read anything to explain it. In the last 6 weeks I have started having the throbbing pain at the base of my skull at the SAME time as the scalp tenderness and pain and that is when I figured out there was probably a connection.

I also think I have been having more occurences of this pain because I have been trying to push myself physically in the last 6 weeks. Same old dance...1 step forward, 2 steps back!!!

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I also get the "pins and needles" pain on my scalp and it hurts to touch my head. But that isn't the only place I get it - it feels like a whopping case of heat rash/poison ivy. I get the same sensation on my left side - across my shoulder and down my left thigh. Sometimes it is so bad it is like a burning sensation.

Initially I was sent to a neurologist who was less understanding/knowledgeable than Karyn. When I got the office notes for my disability he said it was entirely psychosomatic. Thanks, Karyn!

The pain did get better when I was going to a massage therapist weekly but I can't afford that anymore.

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Geneva, Karyn or anyone else with this type of head pain

Do the sensitive places on your head hurt when you cough or strain as well. I have one area on the back right side of my head that gets more painful bending over, coughing, straining, etc. Then I have a couple of other areas that are just extremely sensitive, and not aggravated by coughing, etc. Very weird. :lol:

I also get pain behind my eyes or in the indention between my nose and eyes - anyone else get this? (When I get this, I can definitely distinguish it from sinus pain).

I have different types of head pain at different times and sometimes all of them together at once. I never quite know if they could all be attributed to occiptial neuralgia or maybe caused by some hypvolemia/hypotension issues as well.

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  • 8 years later...

I get this (throbbing pain) associated with my migraines, but at other times it flares up and causes that "zinging" nerve pain (like when you hit your funny bone) at the base of my skull. Prior to starting Topomax (topirimate) my POTS neuro suggested seeing a pain specialist and having him do an occipital nerve injection. Worked great for me as far as helping with the zingy pain. Migraines didn't change a lot so we ended up starting topomax and I don't get the occipital pain as much.

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