Cardiac involvement

Hey guys,

Ok, I've been looking through a few previous discussions/blogs/random comments that have been made between the GPN boards and it seems that there may be more of a heart issue than I would have initially thought. Now this is entirely speculation so bear with me here.........

So you have your normal glosso, with no passing out etc, and you have your extra special feinting time to get a pacemaker kind, and to the best of my knowledge I am in the former camp.

I've been having chest pains on and off for months, firstly I thought it might be due to the drugs, but it settled and I didn't follow up on it, it started again and I went to the docs and was told it was most likely to be tietzes syndrome, some kind of inflamation in the cartillege in the chest wall, I was given bruffen and sent on my merry way. It settled down and wasn't bothering me at all, but over the last month or so as my neuralgic pain has got worse, so has the chest pain, and they seem to be comming fairly close together, whereas before I wasn't aware of any kind of correlation between the two things. Now the pain in my chest is nowhere near as bad as the pain I get in my ears, but it's chest pain none the less.

I've asked about this on the other board, and I've seen a few of you on here mention it a couple of times too, I've not been back to the doc, cause well I dont want to be a pain in the arse, they already diagnosed me etc etc etc, however I think it's about time I went to check it out a bit more thoroughly, Chest pain isn't really something that you should screw around with I suppose, but I've kind of viewed it in the respect that nothings happened so far, and it's been on and off for some time, and I've never had the feinting etc that's described by the vascular guys, and have tried not to be a hypochondriach.

I was going to put a poll up to see what folks experience of it was, but I don't think we've got an option to do that, I'll have to quiz Ben.

So my questions are these:

To the vagoglosso guys who keel over, ( I'm sure there's at least one but I can't remember who!) do you get chest pains also, or do you just pass out?

To the non keeling over members about, do you get chest pains? Palpitations etc? and if so have you followed up on it?

I know Ron mentioned elsewhere that he'd had a number of checks done, and Wendy mentioned that she had chest pains too, but put it down to a know murmer.......... is there actually more to this and are chest pains/palpitations etc something that seems to be a common thread among us even if we're not all having feinting spells with our pain attacks?

Just curious, any input would be greatfully received.

Much love

Gracie x x x

Oooh, the other thing I meant to mention with regards this was that I've in recent months taken to having a bit of "a smoke" to try and keep on top of it when I've not been working, it eases the attacks and it seems to keep them at bay a bit better.

Now given that that lowers the old heart rate, I'm wondering if I should stay the Hell off it until I figure this all out, or given that it eases the attacks if I should be sticking with it until I figure it out!? Am so damned confused!!!


What do you mean by “a smoke”? Cigarettes or marijuana for medicinal purposes? If ai took up smoking, I would get too skinny. I have lost 11 pounds since January because of changing my eating habits. I eat very little meat. I have found that the more I have to chew meat, the greater the attack is in my ears. I started taking the magnesium. I noticed my multivitamin doesn’t have magnesium in it. Maybe I do have a magnesium deficiency. At this point, I would eat dirt if it would help! lol!

Well, I've been a confirmed tobacco smoker for years, the doob has recently been brought back into the mix for pain. I've found with the tegretol my appetite is terrible, and I have to be very careful to make an effort to eat, so the additional smoke helps in that regards as well. Thankfully I don't tend to get attacks too often when I eat, but I can totally understand, please though if you're not eating meat be very very very careful to get enough protein, even if its through supplements. I only mention it because Nichole had some serious problems following her MVD and from what I recall it was due to not having ingested sufficient protein.

I was back at the docs today and was told that young healthy women don't have heart attacks. Apparently tiezes responds to stress, so stress of the attack can bring on a tiezes attack, or words to that effect at least, I just hope to God she's right!

Much love

Gracie x x x

Gracie, I have made sure to get protein. I may eat meat 2x a week. I try to stay away from the hard to chew. I also have plenty of yogurt and an occasional protein shake. I love peanut butter and banana with chocolate protein shakes. Tiezes???I don’t know that one…Oh, one more thing Gracie, I can’t try the smoke stuff for relief of attacks. My job means too much. I will have to find a better way or let’s say legal. LOL! Maybe when I’m old and retired…Thanks for sharing

Gracie, At first all of my attacks were in my throat, it felt like I was being shocked with a cattle prode at the back of my throat on the left hand side. I am glad you mentioned the ear pain and the heart problems. I have had some ear pain when the shocks came back in February they lasted lots longer this time 15-45 sec. and the pain would shoot to my left ear. It all subsided with med 1200mg gabepentin 4xday. This time the shocks are back but they just feel like I am being popped with a rubber band, so far, trying to be careful swallowing, yawning, coughing, etc can trigger spells for me. I have also notice randon heart flutters, but not at the same time as the shocks. Going to the neurologist in August will mention bottom issues then. Hope you are getting some relief!

Funilly enough to begin with my attacks hit my throat/tonsil/ear all the way round that whole area, buta after starting the tegretol it seems to have confined it to just being in my ear. The issue with the heart probs isn't ear specific, sorry I don't know if I wrote that up all wrong, but it's GPN related for a proportion of sufferers is all.

The doc had said to me months ago that it could be tietzes which is basically an inflamation in the cartillege in the chest wall/ between the ribs. And that can sometimes flare up so I've been trying not to get too worked up about it, given that's what he'd said it was but it had been comming closer and closer to the attacks and it was really worrying me given that I know there's a connection between heart issues and gpn, so I went back to the doc, saw a lovely lady doctor who was great, we chatted a fair bit, she did the usual took the tegretol bloods which were fine, she made no change to my pain meds cause it was the first time I'd seen her which was fine, then she did the whole BP and heartrate thing, which was fast but within reasonable levels and she reckoned that because tiezes can be brought on by stress and obviously we all know just how bl**dy stressful the attacks are that that's what was causing it, which made a sensible connection I guess. However what made me chuckle a little was the sheer oblivion in the statement that "young healthy women just don't have heart attacks!!!" A friend of mine had a pacemaker at 29!

Genuinely I think both docs I've spoken to about it have thought I was a nut job, but what made be chuckle even more was her taking my smoking the alternatives for pain relieve in her stride and not batting an eyelid but telling me off for smoking the TOBACCO!

Sally I don't know if I missed something along the lines here, but erm, not quite sure how to phrase this delecately but BOTTOM ISSUES? I'm not sure about GPN causing any of those and I would have thought it would be a whole different kind of doc you needed for that! lol. Best of luck getting them to connect them!

Much love as ever

Gracie x x x