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emdub27

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Posts posted by emdub27

  1. Yes, excellent advice. Thank you all for your help and suggestions. I currently don't have anyone here in Canberra with the type of knowledge you guys have, so I feel like I'm trying to convince Drs to try alternatives which is difficult.

    We will see how the next few days go and I'll start chasing up the vitamin D and O2 setup -  I did obtain an O2 cylinder last year some time, I think with 15L/min regulator, but it was when my wife was getting 10/10 attacks and physically just couldn't get enough O2 into her.

    Thanks again.

  2. 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.

  3. 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.

  4. 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.

  5. 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.

  6. 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.

  7. 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!

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