Issues with throbbing in neck: VNS or a thyroid problem

Posted by jaderm @jaderm, Jan 12, 2022

Hello, I’ve had my VNS for 6 years. It has worked great for me along with my combo of meds. I have the older model and my epileptolgist still says my battery is good. I have never had to swipe my magnet but here recently I’ve been having a intense throbbing in the middle of my lower neck but dnt know if it’s due to my thyroid problem.

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@jaderm

They have been low for around a year. My epileptolgist kept telling me how important it was for me to take my d supplements. However I wasn’t taking it everyday. One I mentioned my thyroid problem he didn’t say it was due to levels being low for a long time but I wonder if that’s the issue as anti seizure meds do cause low d levels. Im currently on lamictal, Aptiom ( Onfi and Topamax. Diagnosed at age 12 now 36. Complex partials is what I have

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I have also been taking my vitamin d supplements everyday now and getting vitamin infusions with vitamin D shots

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Hello jaderm!

I have had a VNS implant for 21 years. I have the older model too, of course. It is great that the VNS has helped you. It has done nothing for me. If the frequency of the VNS was increased shortly before the throbbing began than the throbbing would be the VNS. The pulsation of the VNS would cause the throbbing. Although I am not a specialist I would say if you have thyroid problems the thyroid is the culprit.

I wish the best when you see the endocrinologist. I understand how hard it is and limited you are in finding a doctor who takes your insurance. It's the same for me.

The Best of Luck!
@lsittl

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@jaderm
Topamax is an enzyme-inducer although other meds impact Vit D more, Aptiom is a weak enzyme-inducer, Lamictal & Onfi are non-enzyme inducers. Enzyme inducing meds interfere with the absorption of vit D & calcium.
I'm glad to hear your regularly taking vit D.
The likelihood of fracture is up to six times higher in patients with epilepsy than in the average population depending on which seizure meds you take and the dose.
Also you may want to have your calcium checked or ask your doctor if you should supplement it because of the seizure meds. I'd also ask your doctor if your B-6 & B-12 are affected. Mine is because I take Barbituates so my Neuro put me on B-complex.

Keep taking the vit D. Studies have shown that vitamin D actually has an effect on preventing seizures. In fact I knew a man in Canada who completely controlled his seizures by using B-vitamins.
Here is some info on B-vitamins,

https://pubmed.ncbi.nlm.nih.gov/22658435/

I always have my levels checked before taking a supplement and take the dose my doctor orders.
Best of luck to you,
Jake

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@jaderm
I'd like to invite you to participate in the Epilepsy & seizure group.
Here's a link,
https://connect.mayoclinic.org/group/epilepsy-2bb359/
Take care,
Jake

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