Hello

I hope you don't mind me posting here, but I am looking for advice.
It's quite long so please bear with me....

I'm in the UK have posted previously about my husband who suffers from something that was previously diagnosed with "Paroxysmal Hemicrania" (very similar to cluster headaches but attacks shorter but apparently more frequent).

He was diagnosed about a yr and a half ago and he seemed to go through a cycle and it went a way mostly..

We then moved house and all hell broke loose again in Jan, but he was getting weird symptoms like passing out and stopping breathing after an attack, and at other times was very dizzy he couldn't sit, never mind stand.

Because this was happening so often he was put on long term sick as he couldn't do his job or drive or do anything productive!

At the time we went to the GP who referred him straight away to a local neuro, and he got all manner of scans and things (apparently nothing showing).. but is yet to see the neuro!

We were told the earliest appt would be august (after a referral in jan!!!!), everything got really bad a month or so ago so we decided to bite the bullet and shell out to see a private neuro (actually the same man as on the NHS, but at a private hospital... go figure!)
He's got an appointment next week! (YAY!)

But now he appears to have gone into a sort of remission.. he's still getting the odd dizzy spell, and odd "head ache" but nothing like before.. and can generally function normally!

He also only started keeping a diary 3 weeks ago... (after many many months of pestering him!)..
Obviously we want to see the neuro because we want to know what's going on.. we can cope with the cluster's (almost) but the other symptoms we can't as we don't know what they are... but as "remission" seems to have arrived and taken away the weird symptoms with it we're not sure what to say to him!

Anyone else waited so long for neuro appointments that they've gone into remission? or can anyone else give any advice?

Thanks so much for reading this far!

Bex

Hi Bex. Our UK friends can chime in on the frustratingly long wait for an appointment, but it isn't necessarily all that different here in the states. I had to wait 3 months in the long ago when these first started for me. And while I was not in remission upon visit, I did go into remission shortly afterward, thinking it was the meds that did it. The cycles started back up again a year later and meds had no effect. In those days (pre this site) I did whatever I could to deal with the pain and prayed for the cycle to end, which for some years, it would eventually.

As to the symptoms you mention:


Quote:

he was getting weird symptoms like passing out and stopping breathing after an attack, and at other times was very dizzy he couldn't sit, never mind stand.

I only passed out twice in the past 24 years of attacks, both times from an unrelenting KIP 10 that lasted for 6 hours. Not sure if it was from the pain or exhaustion or both. I never experienced it regularly though. That apnea stuff and dizziness are really worrisome and I would not even hazard a guess...that's why God invented neuros. I pray only the best for you and your husband, and that there is nothing more wrong with him than a subset of normal CH symptoms. Wouldn't it be great to find out he's just a weird CH sufferer and not that it's something far more sinister? As if this wasn't bad enough. In the meantime, keep us posted, OK? Blessings. lance

Hi lance!

Thanks for your reply!
He was put on meds last year which he though worked but appeared to be because he went into remission like you! 
Must admit we're kind of hoping its not cluster headache and something they can cure!

He really doesn't handle the pain well and so far nothing works
The other symptoms are very scary especially as if generally remembers nothing after the pain! So he thinks I'm lying when I tell him he passed out and that he was grasping for air after having stopped breathing fo a bit!  Occasionally he doesn't even remember  the pain,  even though he'd been screaming about it just five mins ago!

From what I've read here none of it sounds right!  So fingers crossed we get a neuro with some sense who actually listens unlike the previous one!

Will keep you posted!

Even if he is in remission that does not make the appt with a Neuro useless. Since these headaches are DX by clinical/experiential signs and not lab tests, etc. the doc can still do his job.

Would suggest you contact your excellent support group: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's my understanding that you have a right to go to a speciality clinic for headache, by-passing the usual local services routine. They can guide you through your system.

Hi Bob!

Thank you for the reply!  I will check out that site!  I think I've stumbled upon it before, but for some reason settled here!

I am just hoping when we go to the neuro we give enough details that he can actually have a fair idea what is going on!
Hopefullw as we're paying we'll get more than the standard fifteen minutes we seem to get on the nhs!

I can only make comments about healthcare from our (U.S.) perspective but keep in mind---

A number of messages from the U.K. suggest a low level of training/experience by community based docs re. headache.

But this is true here, also, and includes the majority of U.S. neuros who received surprisingly little training in hadache.

We have come to the point of suggesting folks seek a headache specialist, if at all possible, rather than risk long delays trying to sort out our docs who have little skill to offer us.

Whether this is an issue with your neuros, I don't know. But being a bit skeptical is probably the better posture until the neuro demonstrates his skill to you.

It's the difficult posture of the patient having to evaluate people outside our own experience! One tool is to compare what your doc is Rx against the meds outlined in the PDF article, below.

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