Head/Facial Pain

[Womble]

I have been struggling for over a week with what I can only describe as nerve pain, mostly in my face, but also running into the side of my head/temple.

I have had migraines most of my life, neurologist described them as 'complex migraines' I think because I have a few different types and get different auras with each.  One of the types of migraine I have is totally disabling, lasts days and seems intractable to all the medications they've tried over the years.  However, this 'nerve' pain is nothing like any of those.

The only way I can describe it is as a really sharp, nerve-like pain, running along the nerve lines in my face, so above and below my eye, across the tops of my top teeth and under my lower teeth and up into my nasal passage.  On top of that it will sometimes shoot into my temple and that triggers the ice-pick headaches I've had for as long as I can remember, but causes them to happen in clusters that last longer than the usual lightning-bolt quick jolt of pain.  It's also postural to some degree, in that when I change position or stand up I have to clutch my head for a minute because the pain is that much worse.  I'm also finding it harder to stay seated, rather than lying down for any length of time, when usually I can get by sitting with my feet up for a while, then getting up and doing my jobs/housework etc in short bursts.

None of the over the counter medications I've tried seem to touch it.  I've tried migraleve (paracetamol and codeine) and lysine (ibuprofen) (although I have to watch NSAIDs at the moment as I have a duodenal ulcer that's kicking off).

The only other thing I've noted is that I seem to be suddenly having bradycardic drops.  I've had them at night before, but alongside this head pain they've been happening during the day as well.  So where my usual resting hr is around 62-64 (it's regularly been higher though, between 75-80, the last week or so for some unknown reason) it's dropping down to 49 bpm.  It seems to drop down quite quickly, then slowly climb back to normal, then repeat the cycle over and over.

I have finally been sent my prescription for Ivabradine and now I daren't take it, as I'm worried about there being a problem caused by the already low hr.  I've been trying to reach my consultant, but his secretary was on holiday all last week.  Going to call them as soon as the office opens today, but I don't like my chances of getting any appointment any time soon and it's not common to get to speak to consultants over the phone here.  My family doctor will be no help, as they refused to share care re the Ivabradine due to lack of knowledge about either dysautonomia/pots or the off-label use of ivabradine for them.

I have no idea why I am writing this post really, as there isn't anything anyone can do, I guess I am just feeling alone and worried - not helped by my husband working away this week and next and my parents being on holiday, which leaves me with three children (one of whom has ASD) to look after on my own.

Sorry for the whinge.  I just needed to let it out somewhere.

[Katybug]

Hi Womble,

You might want to read this thread and the link in it. http://forums.dinet.org/index.php?/topic/27750-occipital-neuralgia-vs-migraine/

Also, you may want to read up on trigeminal neuralgia also as it is similar to the occipital neuralgia described in the link above, however, trigeminal neuralgia affects more of the face.

Feel better!

[Womble]

Hi,

Thank you so much for replying Katybug.  

I have read the occipital neuralgia thread, but I don't think that's what I have, as it doesn't seem connected to my neck or the back of my head at all.  

I have a friend that has TN and it's nowhere near as bad as the attacks she had before going onto carbamazepine, it's more  constant and less episodic, if you see what I mean?

I think I'm going to have to book an appointment with my family doctor/GP, but I already know they won't be much help.  I'm hoping it's not going to be a long-term thing.  It's been just over a week now and I have had it last up to about 10 day max in the past, but it doesn't seem to hang around for months on end at least.  It's just horrible timing with my husband and family all being away.

Called my EP's office, only to be told his secretary is not in today, after already not being in at all last week and the second half of the week before and the two other cardiology secretaries I spoke to said they can't help me, I need to speak to my EP's specific secretary.  I don't want to start the Ivabradine, until I'm sure he is going to continue to prescribe, now my GP has refused shared care and now I dare't start until this facial issue is sorted, not to mention the bradicardic episodes.  Worried about starting it at all if I can't reach the prescribing physician for weeks on end.

I am so grateful for this forum, as I feel so alone with all this right now.   

[Womble]

Oh! Don't know what happened to my formatting there.  I cut and pasted for the spelling of carbamazepine and ended up with it all highlighted. Sorry. 

[Clb75]

There are two types of TN, one is called atypical which presents as a more constant pain instead of coming in spurts. It may be worth checking with a doctor about it. Typical pain meds won't help with nerve pain, you usually have to take something like an anticonvulsant--gabapentin, carbamazepine etc to help with that type of pain. My grandmother had TN and wasn't helped by meds or the surgery so I can imagine how painful it must be for you. Good luck!

[Womble]

Thank you Clb75.  I will book an appointment with my GP and see what they have to say. 

[corina]

I'm so sorry Womble. There's nothing I can add to help, just wanted  you to know that I feel for you and hope you'll be able to figure this out!

[Womble]

Thank you so much corina, that's really kind of you. 

[plaster89]

Womble, I am currently taking Ivabradine so maybe that will help what I say. This medicine appear to be one of the few that actually make me better. My resting heart rate was pretty low even when not taking any drugs, like 60 bpm or sometimes under it. I was taking Bisoprolol first and it could have lowered it to 50 or even less, making me without energy. With Ivabradine, it hasn't dipped drastically but it is clearly lower overall. I feel really stronger with more energy. Of course it is still far from great but it's definitely better. For example, I feel really tired during first hours after waking up. First few days were difficult, I felt confused but then it was a nice improvement. Hope that helps.

[Womble]

Plaster, thank you so much for your post.  So sorry I haven't managed to get back here before, this week has just been ridiculous with my husband being away, my facial pain and other symptoms off the scale to my norm and lots of other stuff suddenly cropping up with my kids/school and even the dogs!  Can't wait for the weekend to get here.

I was on Bisoprolol, only at a very lose dose and it floored me completely.  Constant diarrhoea, heart rate in the 40s and bp so low it wasn't recordable and when my dr told me to start taking it in the mornings (pharmacist advised evenings) I couldn't get out of bed for days on end without passing out.  I also had dreadful cognitive issues and was totally exhausted the whole time I was on it.  My EP took one look at me and took me straight off it.  

It's so reassuring to hear that you are doing well on Ivabradine even with a normally low resting heart rate.  Mine is usually 62-64 when resting in the day, but drops into the 50's when I'm in bed. I easily get up to 175 just shuffling across the road to my daughter's school though and it would be lovely if I could actually start feeling strong enough to exercise.  I really miss walking my dogs - we used to do 4-5 miles a day, but I can't walk them at all at the moment, so have to rely on my husband and other people to do it for me.

I have finally managed to reach my EP's secretary and she is passing on a message to him for me.  I have to wait for either him or her to call me back, but she said it may be a few days.  The UK system is so silly, as my family doctor has refused to agree to shared-care and monitoring for the off-label use of Ivabradine, I now have to wait and see if the EP will be authorised to fund it from the hospital budget.  I can't start the prescription I have, as he only wrote that as an interim prescription while I waited for my family doctor to make up her mind whether or not she was going to agree to the shared care (under which agreement her clinic would have joint-funded the prescriptions) and his secretary, agreed that I can't start taking it without someone medical being responsible for monitoring me while I'm on it.  I also told the secretary that I have been having intermittent drops to 49 bpm, but am hoping, as they are intermittent and transient and I still have a good sinus rhythm, he'll say it's still ok for me to have the Ivabradine.

Thanks again for posting your experience with Ivabradine.  I really appreciate it.

[plaster89]

15 hours ago, Womble said:

I was on Bisoprolol, only at a very lose dose and it floored me completely.  Constant diarrhoea, heart rate in the 40s and bp so low it wasn't recordable and when my dr told me to start taking it in the mornings (pharmacist advised evenings) I couldn't get out of bed for days on end without passing out.  I also had dreadful cognitive issues and was totally exhausted the whole time I was on it.  My EP took one look at me and took me straight off it.

Same with me. My energy levels dipped significantly when on bisoprolol and the heart rate was really low as well. I struggled to walk for longer, something wasn't a very big problem earlier. I definitely feel much stronger though my heart rates never reach that high, it was maybe 120-130 when without medication. I haven't had any significant complications when on Ivabradine.