Headaches following infusion question

Had my first round of infusion therapy in Sept. (5 days in a row) with no problems. Just received a single dose on 10/19/2015. Had no headache following the treatment. However, two days later, started with a headache in a strange place. About 2 in. above my left ear. It feels like a shot and lasts about two seconds and subsides. Returns in about 1 min.. This sound familiar to anyone?

I get those and describe them as "zingers". They show up in my temple area and literally make me stop whatever I'm doing for a second or two. They come and go. My Neurologist does not appear to be too concerned with them. The more tired or stressed I am - the more pronounced they are.

Joe,

I guess you could call me a shingles survivor, among other things. Three bouts of shingles in one year and a rhizotomy set off my CIDP. I get tiny bumps, or NO bumps with the shingles, since I've had them so many times, even after the vaccination and taking Valtrex twice daily every day. But, I do get the zinger headaches that you are describing when the shingles virus decides to activate. If you have a bump/blister, it can be biopsied for shingles. Don't mess with shingles.

Jan

IVIG increases the amount of immunoglobulins in the blood which regulates the immune system to keep it from attacking itself. IVIG does not suppress the immune system.



Regarding DazedandConfused's quotation from xxxxxxx I would be skeptical of any information posted on the xxxx website starting with the phrase "xxxxxx Foundation Number 1 site for diseases on Planet Earth" at the top of the homepage. This is a site with sections such as one on "Bible healing." The GBS/CIDP Foundation International website (http://www.gbs-cidp.org/) is more reliable, in my opinion.

Ido have shingles. Went to the Dr Monday. Have been a mess.Thanks to all of you.

Before my diagnosis I would get headaches fairly often, but nothing drastic. But since my diagnosis and treatment began (almost three years ago) I almost always have a headache of one type or another. Most of the time it's just a slight annoyance, and Advils and Tylenols usually make them barely noticeable, but I'll sometimes go a week or two with a deep-set headache that I just can't shake and that puts me in a bad mood.

But I also get those quick, sharp headaches that only last a second or two. Sharp, piercing headaches as if some wires in my head had short-circuited for a second. I'm pretty sure they're clinically "Primary Stabbing Headaches," which are not particularly dangerous or worrisome, as far as I can tell. Just annoying, and every time you get one you think you're having a stroke. I'll go months at a time without it, and then I'll go two or three weeks where it happens 10 times a day.

Dear DazzledandConfused,

I'm more confused now. If my immune system was faulty and decided to munch on my nerves, having healthy peoples' immune systems in me sounded like a good idea. Since IVig is an immune suppressant according to the article you have listed, does that make us more susceptible to colds and other bugs going around? I was thinking just the opposite.

Thank you,

Jan


"Immunosuppressant" needs to be defined here. In this case it is suppressing the part of the system that is attacking the myelin, not the whole system.

I'm not a doctor, but based on my research and conversations with my neurologists, the immune systems of people with CIDP are neither overactive nor underactive. They're just working with incorrect instructions. Those incorrect instructions tell the immunoglobulins that the myelin sheath around the peripheral nerves is a foreign substance that should be attacked and destroyed.

IVIG replaces the badly instructed immunoglobulins with ones that do not have those bad instructions. Basically it's like firing someone who is bad at their job and replacing them with someone who is good at the job.

The cure will come when it's discovered WHY those immunoglobulins are badly instructed. As we know, the new IVIG has to be infused every 2-4 weeks, because the good immunoglobulins eventually start acting on the same bad instructions as the ones they replaced.

To extend the metaphor, it's as if you fired the people who were doing a job badly and replaced them with new people, but those new people work for the same manager as the ones that were fired, and since they take their direction from that manager, they end up doing the job badly too. Because the problem is the MANAGER.

Unfortunately, the research still hasn't figured out how to fix or replace the manager, so in the meantime we keep firing those old immunoglobulins and hiring new ones. Wash, rinse, repeat.

BTW, I used to get colds all the time, three or four times every winter and usually one or two during the summer. And they hit me really hard. Since I've started IVIG (almost three years ago) I've had no flu, and maybe three or four pretty mild colds.

Dear Tingle,

Your explanation makes the best sense ever. I think I will use it with my neurologist, if you don't mind. Thank you so very much.

JanD

Tingle said:


"Immunosuppressant" needs to be defined here. In this case it is suppressing the part of the system that is attacking the myelin, not the whole system.

I'm not a doctor, but based on my research and conversations with my neurologists, the immune systems of people with CIDP are neither overactive nor underactive. They're just working with incorrect instructions. Those incorrect instructions tell the immunoglobulins that the myelin sheath around the peripheral nerves is a foreign substance that should be attacked and destroyed.

IVIG replaces the badly instructed immunoglobulins with ones that do not have those bad instructions. Basically it's like firing someone who is bad at their job and replacing them with someone who is good at the job.

The cure will come when it's discovered WHY those immunoglobulins are badly instructed. As we know, the new IVIG has to be infused every 2-4 weeks, because the good immunoglobulins eventually start acting on the same bad instructions as the ones they replaced.

To extend the metaphor, it's as if you fired the people who were doing a job badly and replaced them with new people, but those new people work for the same manager as the ones that were fired, and since they take their direction from that manager, they end up doing the job badly too. Because the problem is the MANAGER.

Unfortunately, the research still hasn't figured out how to fix or replace the manager, so in the meantime we keep firing those old immunoglobulins and hiring new ones. Wash, rinse, repeat.

BTW, I used to get colds all the time, three or four times every winter and usually one or two during the summer. And they hit me really hard. Since I've started IVIG (almost three years ago) I've had no flu, and maybe three or four pretty mild colds.

JanD, I don't mind at all. And please report back with your neurologist's reply, even if (especially if) your neurologist doesn't agree.

Dear Tingle,

I will let you know for sure. I'll see him in January. I always take my husband along for his memory. I'll have him memorize it:)

JanD