Help for my wife

[emdub27]

Hello,

Firstly sorry about the long post, but I want to get all the info out to receive the best advice. I'm posting this for my wife who is suffering quite badly.

My wife has suffered migraines all her life, usually getting one every few months or so.

Around April/May last year she got a headache which didn't go away after a day or two and was not a migraine headache either. After about two weeks we were beginning to worry as the headache was not going away and had begun to exhibit the characteristics of cluster headaches. We went to the GP who quickly diagnosed her with cluster headaches. Since then my wife has not had a single headache free day, so this places her in the chronic category.

She was put on Verapamil straight away, starting low and increasing to 360mg - which is her current dose. This seemed to reduce the number of attacks from 20-30 per day down to around 12, but the pain was still 9-10/10. She has had maybe 6 courses of steroids which usually take a couple of points off the pain scale. She tried oxygen therapy, but was to too physically exhausted at that time to probably inhale enough for it to work. She tried 4 different triptans with no affect. She tried topiramate for a little while which didn't help and made her terribly sick. She has also had two rounds of some strong anti-inflammatories but I forget the name of that one.

She has had 3 injections. The first was into the greater optical nerve around September 2014, this brought the pain from around 7/10 down to 3-4/10 so was pretty successful. A couple of months later she had another of these which had no affect. Early this year she had an injection into the dorsal root C2 which didn't have much affect if any. Since then the pain has steadily risen.

We started seeing a Neurologist in Jan who put her on Sandomigrane - she currently takes 2mg. This doesn't appear to be helping. About a month ago the pain was around 7/10 with up to 10 attacks per day, but there was one week where she was getting lots (like 30) little headaches of shorter duration. This change, plus not really reacting to any of the "normal" line of medicine, caused the Neurologist to consider a mis-diagnosis. He put her on Lamotrigine 100mg to treat her for SUNCT but this doesn't appear to be helping either. Currently she is getting about 12 7-10/10 attacks round the clock and it's really wearing her down.

So what's next? That's where you guys might fit in. The only things I can think of is to ask to Neurologist if my wife might have Hemicrania continua or try busting with non-conventional medicine.

Any advice is very welcome!

[tangerinearmy]

it doesnt sound like cluster headaches for a few reasons

1 they usually last for approx 40 mins then stop you may get 3 or 4 a day

20 -30 a day down to 12 tells me this is not clusters.thats the good news the bad news is you ll have to wait for someone with better knowledge than me.

im sure the good people in here will be along to help remember most are americans so prob still in bed

[Pete M]

Hi emdub27

1st: Please note that I am NOT a doctor

2nd: This is NOT a diagnosis

I have done a fair amount of research about headaches and have a few questions and comments for you.

Has your wife had an MRI? This is important to rule out other problems.

At the start of your post you mention a continual headache. This sounds like Hemicrania Continua (HC). Pain for HC feels like 'jabs' or 'jolts'. Might feel like you have something(like dirt or an eyelash) in your eye. HC responds well to treatment with Indomethacin.

10 or more attacks/day sounds more like SUNCT or Paroxysmal Hemicrania (PH). How long do your wife's attacks last?

CH attacks are approx. 15-180 minutes in duration. *More common in men, with a 6:1 male to female ratio. Accompanied by restlessness, pacing and other signs of agitation. Awakened from sleep.*

SUNCT attacks are approx. 5-240 seconds in duration. *Up to 200 attacks/day.*

PH attacks are approx. 2-30 minutes in duration. *Occurs more often in women. Not likely to feel restless or awaken from sleep.*

Hope this helps

Best wishes

[CHfather]

em', I tend to agree strongly with you, tangerine, and Pete -- looking for a different diagnosis seems very sensible.  The good thing about indomethacin is that it's generally a simple test of CH vs HC (not 100% of the time, but often enough).  There are a whole lot of "headache" conditions that might be looked into.  Given her situation, I would think that a headache center would be a good idea.

[MoxieGirl]

Hi emdub77,

Like your wife, I've had migraines off and on all my life. They run in my family, and are pretty common with my siblings and nieces and nephews.

Dec 31, 2006 I got a headache. It lasted 24/7  for 7 months.

During that time, the headache was punctuated with many migraines and cluster attacks. It was a very bad year.

Unlike most people though, I'm 95% sure I know the cause of my chronic daily headaches and clusters - Hormones.

In 2006 I was undergoing hormone replacement therapy to change my body from male to female. The result, or so my neuro and I believe, is that changing the hormones affected my hypothalamus, which set off the bad headaches.

Normally a CAT scan is part of the diagnostic process for clusters - doctors want to make sure there isn't something sinister in the brain causing them. But then I'd recommend getting her hormones checked, and making sure they are in normal ranges for her. Many cluster heads report a lot testosterone level, and it would be worth while, I think, to have it checked.

MG

[Whooligun]

3 weeks ago was given Indomethacin to try after having a 4 year "cluster headache".

It worked.

No more headaches. I used to suffer from clusters, but am now diagnosed with Hemicrania Continua. Or maybe both. Who knows?

At the very least, as mentioned above, you should mention Indomethacin & Hemicrania Continua to your neuro/doc.

Good luck.

[emdub27]

Thank you so much for your replies. Unfortunately I've spent the last few days at my wife's bedside in hospital. It's all become a bit much physically and mentally for her.

She was admitted into the neuro department and has spent 2.5 days on lidocaine via IV. After about 24hrs she said the pain was not as sharp but rather more like a blunt instrument hitting her around the eye. She is currently getting 20-30 headaches a day, mostly 7/10 pain. Today the lidocaine was stopped as the weekend neuro said if that's all the benefit she's received it probably won't get any better.

The dr has prescribed an anti-depressant (I'll get the name) which she will start today, which he believes helps some headache patients, and he will review her in a couple of days.

@Pete - yes she had an MRI last year which was all clear. She also had an injection under CT and the images around the nerves were all good. Usually my wife describes the pain as very acute, located around the eye, always the left side, lasts for 5-30 minutes (sometimes longer), is followed by shadow headaches until the next attack, eye waters, nose runs, no aura or tingling like with her migraines, they happen day and night, often at similar times.

@CHfather - her current Neurologist is apparently one of the most experienced here (Canberra, Australia) but I am definitely looking elsewhere for help.

@MoxieGirl - I'll try and get this tested

@Whooligun - I've mentioned Indomethacin to the neuro at the hospital and he's happy to try it, after the new anti-depressant so they know which works if it helps.

Thanks so much for the response, much appreciated. Well it's back to the hospital for me now.

[CHfather]

Wow.  Terribly sorry to read this, em'.  I'm certain that it is also torture for you to see this happening to her.

They didn't try oxygen in the hospital?  Or prednisone? 

I'm not the doctor, but gosh, why not, really, do the indo at the same time as the anti-depressant?  Aren't we more interested in attacking her pain right now than following the scientific method?  If her pain is reduced, couldn't we then stop one and see what happens?  If the indo were going to work, it would work right away.  It is a more direct attack on a possible condition (HC) than the indirect approach of the anti-depressant.  Every once in a blue moon, we encounter someone who has been helped by some kind of anti-depressant, but that's very rare. 

I'm just blabbing my opinion here, and expressing my frustration.  I hope whatever is done works great.

[spiny]

He is not the first Neuro. to prescribe anti-depressants. Many do when the first lines of defense do not work. But I am surprised he went to it before giving the Indo. a trial run. He must think it is not HC.

I am so sorry for her suffering. But, I am glad that she is under constant care at the hospital. Hopefully you are able to spend a lot of time with her there. Just to make sure that they are on their toes!!!! Hospitals over here suck. Perhaps they are better where you are. I really hope so.

spiny

[tangerinearmy]

im sorry for your wifes pain

if what you say in your first post is true its not cluster headache imo

so

you have to try the indo

[emdub27]

So the antidepressant she is on now is amitriptyline and she is taking 50mg. We will see how this goes as my understanding is it can take over 3 weeks for antidepressants to take full effect.

I did manage to convince the Drs to prescribe indomethacin so I'm pretty anxious about the next 24-48hrs. I asked about testing her hormone levels but they had no idea what I was talking about.

It's not over yet, but at least it feels like we are doing something. The knowledge base of this online community is invaluable as you just can't assume that the medical world has the knowledge or is able to deal with these conditions.

Thanks so much for your advice.

[tangerinearmy]

fantastic and fingers crossed

if it doesnt work though you have to still bepositive for her and let her know there are other roads.

[Pete M]

Really hope the indomethacin works.

Keep us posted

[CHfather]

Hoping for good results -- and good for you for pushing for the indo now.  Fingers and toes crossed.

If she has CH, the amitrip (Elavil) might help, but I'm afraid it's not likely.  Here's a thread on that topic (that refers you to another thread) from a few years back: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1352170054/7

[spiny]

Elavil was a moderator for my pain 40 years ago. It kept it lower than normal. For that, I was thankful.

I hope that she is doing better now. Please let us know?

See if they will check her vitamin D levels. Cheap and fast. Low D can have an adverse effect on CH. So many people in Aussie land have really taken the sunscreen to heart that they are vitamin D deficient. As in girls in their 20's are suffering from Osteoporosis!!!!! It would not be out of line to ask for the D test. This was on world news not a month ago. So, bring it up? Even if she does not have CH, you don't want to see her have Osteoporosis either.

[Ricardo]

So the antidepressant she is on now is amitriptyline and she is taking 50mg.

Be aware that Amitriptyline has been shown to greatly intensify psychedelic drugs in a not good way.  For some reason it seems to make many peoples trips not just more intense but especially terrifying, adding a somewhat sinister flavor to the experience.  In my opinion, if she is going to bust I would make sure she has been off the Amitriptyline for at least 2 weeks.  (unless she decides sometime in the next week that she's going to scrap the whole idea and throw the script in the trash.  I would think 1 week would be sufficient in this case BUT I can't guarantee anything.)

-Ricardo

[ThatHurtsMyHead]

The VA had prescribed Amitriptyline to me some time back.  After reading how effective it was, as compared to the LONG list of side effects (some are really really bad).  I opted to dispose of it in the garbage (hind sight I hope it didn't end up in the water supply...)

J

[emdub27]

Well it's been a rough few days.

On Friday it was decided to transfer hospitals as it was taking too long to get a bed where she could be continuously monitored and given a higher does of Lignocaine. She has had about 48hrs of 4mg Lignocaine which brought the pain down to a 2 or 3 - so that was great. However, the drs said that's as far as they are willing to take it and she needs to come off it. Early this morning it was decreased to 3mg and soon after she got big migraine - she used to get migraines a couple of times per year before she started getting these headaches but hasn't had one in the past 12 months. She was given sumatriptan which calmed down the migraine but it still wasn't pleasant to have two types of headaches at once.

She also had some Ketamine given via IV on the weekend which did nothing.

The neurologist who was treating her is on holidays for 2 weeks so we are starting fresh again. Here is the current medication list - unfortunately I wasn't able to be with her all weekend, as I was looking after our daughter, so I wasn't involved in all the decision making:

Lignocaine IV - to be ended today

Pizotifen (0.5mg) - started on the weekend

Verapimil (360mg) - been on it for 12+ months

Indomethicin- (25mg) - started last Wednesday

Amitriptyline (125mg) - possibly not continuing this as the neuro thought it should have shown promise by now given the does

Ondansetron (4mg) - given for nausea

Metoclopramide (10mg) - given for nausea

Gabapentin (300mg) - started on the weekend I think

Lamotrigine (50mg) - been on for a few weeks, agreed to wean off

Sumatriptan (20mg) - for the migraine this morning

Lithium (250mg) - started today

Methylprednisone (1000mg in 50mL) - started today

From the list I have she's been taken off the Sandomigrane which I agreed seemed logical as she had been on that for over a month. She's been on the Indomethacin for about 5 days and while I really hope that's what has brought her pain down, it didn't seem to be helping prior to the weekend.

I'm waiting on blood test results to check vitamin D and hormones. Neuro said he'd be willing to give her some vitamin B as he's seen that help before.

I'm not happy with the lithium and steroids, on account of the side affects, but we are more interested in treating the acute pain now I guess. One question I have though, for those of you who have found something that works, how long does it take before it works? I've read a couple of people say on day 1 of taking something, but is this the norm or does the pain slowly back off?

Thanks again for all the help.

[CHfather]

I don't really know what to say, emd', except that I sure hope that something in that cocktail works.  What a terrible trial, for the two of you.

Just to be clear, has oxygen still not been tried?  That's just so completely puzzling to me.  Maybe she is, as you said in your first post, just too depleted to use it effectively?  Has anything been said about that?

The lithium and gabapentin doses are both pretty low (for CH).  I'm not saying they should be higher, since I'm sure there must be some concern about putting all this into her system. But typical lithium dosage is 600-900 mg/day (in divided doses), and gabapentin can go up to 3600 mg/day.  I'm not a doctor, and I guess you have to trust that these folks know what they're doing. 

Can't tell you how much I hope that something works, and then what it is that's working can be sorted out.

[emdub27]

No talk of oxygen by anyone, but I can ask. Those doses might not be daily doses so I'll check.

Currently she says the pain is around 3 or 4 and spikes almost hourly, increasing to maybe 5 for 7-15 minutes.

Thanks for your thoughts and concerns, very much appreciated.

[ThatHurtsMyHead]

+++ CHF's mention of Oxygen.  It's the #1 abortive for most of us clusterheads.

Also:  I'm not a fan of recommending it, because of damage to one's body.  But has she tried a Prednisone taper?  ie.  Starting at a high dose of pred then slowly tapering it down.  Prednisone is a known cycle terminating drug (but it can do serious damage to the body if on it at very high doses for very long).  It can cause joint damage.  Our friend on the board here Dan had a hip replacement due to pred. 

Again, I'm certainly not a fan of Pred, but if your wife is so bad she's in the hospital, and they're dumping every garbage med in her blood stream they might want to actually go with two of the most effective, IMHO   (O2 - Abortive and Pred to stop the cycle)

PFW,

J

[CHfather]

I agree with THMH (though it seems that they are dumping prednisone in there along with anything else they can think of). It would seem like you would start with the two most likely things to work (if she has CH), pred and O2, and maybe the one most likely to work if she doesn't have CH (the indo she's taking), and see what happens.  This is somewhat contrary to my earlier suggestion of trying indo along with the amitrip that they decided to give her . . . but it seems there must be a limit to how many drugs you can stick into someone at the same time.   Again, this is just my non-doctor reaction.  They might be perceiving it as a big enough crisis that it needs to be attacked in that way.

[Pete M]

Hey emdub27

Sorry to hear that your wife is still suffering but glad that her pain intensity has been reduced. Thanks for keeping us up to date.

I said it before, I'll say it again: I am not a doctor.

I sincerely hope that something in that 'drug cocktail' will help your wife, and that the doctors will be able to discern which medication to attribute any positive results to.

I think Pizotifen is a sandomigran brand name.

I believe Methylprednisolone is in fact some type of prednisone.

Definitely pursue the O2.

I am still hoping that the indomethacin will work. I understand that it can take up to 2 weeks to see results.

I think one of the members here named Whooligun had success with indo perhaps you could PM him and ask how long it took to get results.

Take care

[spiny]

Methylprednisone

This is Prednisone and should start to help very quickly if it is going to help. I have been given Pred. for CH and TN at different times. I am sure that they plan on this being a short term treatment so she does not suffer any long term side effects. It will get her thru the acute phase till something else works is the idea I suspect. It reduces inflammation and stuff. It usually kicks in quickly.

I hope that she is better today!!!!!!! They are giving her a lot of stuff trying to get her pain down. Then they should be able to figure out what worked. I hate that they are bombarding her, but they must figure it is needed.

[emdub27]

Over the last 3 days my wife has been given 1000mg of Methylprednisone (steroids) each day which got rid of the pain less than 24hrs after the first dose. That's great, but today she was discharged from hospital as the Dr said that's all they can do for now - the Ligonocaine and Methylprednisone were the big guns and cannot be safely administered for a number of weeks.

She has been sent home on Lithium (500mg), Amitriptyline (100mg), Gabapentin (900mg) and Verapamil (360mg) all daily doses. She was taking Indomethacin for about 5 days so the Dr was convinced it wasn't going to work for her and removed it.

I did manage to get some blood tests done but couldn't get a Dr to explain it to me - it's been a real battle with the medical staff over the last few weeks. Vitamin D came back at 34 nmol/L which appears to be almost severely deficient. Testosterone came back at less than 0.4 nmol/L which appears low from my quick search.

Although she was pain free this morning, she has mentioned a few random twitches in the pain area and is understandably very anxious.

We've been told to see what happens and go back to our normal Neuro in a couple of weeks to review.