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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Help end the madness http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1426760413 Message started by emdub27 on Mar 19th, 2015 at 6:20am |
Title: Help end the madness Post by emdub27 on Mar 19th, 2015 at 6:20am
Hello, I've been posting over at clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1425464986 about the madness my wife has been going through recently. We still don't have a long term solution and any suggestions would be greatly appreciated. I've started reading about the vitamin D regime and think we should start that.
Given all the medicine she has tried, is it worth trying anything again in case the dose was wrong, other meds interfered etc? Any other thoughts? |
Title: Re: Help end the madness Post by emdub27 on Mar 19th, 2015 at 6:23am
Sorry about just linking to the other forum but there's quite a lot of medicines and treatments I've listed there plus board member suggestions. Thanks for any help.
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Title: Re: Help end the madness Post by Bob Johnson on Mar 19th, 2015 at 8:48am
We can all understand your burden and frustration.
BUT, to expect each person who is willing to help you to try and locate your posts on the other site is not going to work. (I tried twice and failed.) Sugest that you write a good SUMMARY of your situation focusng on: 1. the docs (all of them) who have been involed--their background/education in treating headache. 2. outline of the treatments which have been tried. With meds--med, dosing, how long used, results. 3. outine of symptoms, major changes over time, response to treatments used, etc. 4. where you live. Reading the entire history will not be as useful as a coherent summary. TOO much matrerial is confusing/misleading for us, not being M.D.s. |
Title: Re: Help end the madness Post by emdub27 on Mar 19th, 2015 at 11:06pm
Sorry about that Bob, I thought it might have been easier that way. Here's a bit of a summary based on the info I have. I am currently going back to Drs and hospitals to get a full history.
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. 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. We started seeing a Neurologist (who is experienced in headaches, having worked with many sufferers in his private practise and headache clinics) in Jan who put her on Sandomigrane - she was taking 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. About 2 weeks ago she was admitted to hospital as she was getting somewhere between 20-30 headaches at 7/10 pain - they were almost hourly. While she was in hospital she was given: Lidocaine (up to 4mg IV) - this brought the pain down to 3/10 and had a calming effect Indomethicin (50mg) - took for 5 days but stopped as neuro said that was enough time to see results Methylprednisone (1000mg in 50mL) - 3 doses over 3 days which took away all the pain + all her previous meds She came home from hospital yesterday and was prescribed: Lithium (500mg) Amitriptyline (100mg) Gabapentin (900mg) Verapamil (360mg) I managed to get her vitamin D and testosterone levels checked, vitamin D came back at 34 nmol/L and testosterone came back at less than 0.4 nmol/L. Now she feels completely zapped coming off all those drugs. On top of that, around 36hrs after the last steroid dose she started getting spasm-like feelings around the pain area. She said it feels like the headache pain but only lasts a second and occurs infrequently. So who knows what will happen next but she is understandably quite anxious. Any thoughts are very much appreciated. |
Title: Re: Help end the madness Post by Hoppy on Mar 19th, 2015 at 11:57pm
Hi emdub, and welcome,
I'm sure your wife has been all around the world of CH treatments. So, if she wants to try the vitamin D3 regime which has lots of us here CH free, just shoot Batch a PM, and he will talk you through it, and hopefully get your wife CH free. Hoppy. |
Title: Re: Help end the madness Post by Peter510 on Mar 20th, 2015 at 1:36am
Hi emdub,
Your wife's D3 level,at 34 nmol/L is extremely low. I have had Ch for 13 years with the last 2 turning chronic, so I feel for her. When I had my D3 checked about 8 weeks ago I was at 33 nmol/L and my Doctor was a bit shocked. 4 weeks later, after starting Batch's D3 regimen, I had it checked again and was 163nmol/L. The difference in frequency, duration and severity of attacks was dramatically improved. I believe Batch would tell you the target to get to is 200nmol/L. I'm due to have another measurement taken in the next 2 weeks. Whatever the final diagnosis, your wife needs to address her D3 deficiency now that she knows how low it is. Maybe she will get the kind of benefit I and many others did. Nobody here underestimates the importance of a good supporter and you are certainly that, so thank you from everyone here for that. Mind yourselves (both) during this journey and don't underestimate the stress this is putting on you too. Keep updating. Peter. |
Title: Re: Help end the madness Post by AussieBrian on Mar 20th, 2015 at 2:40am
G'day Emdub, and welcome. Anyone who helps a headache sufferer is a friend here.
Many of the symptoms you outline fit neatly into a delightful little headache syndrome called paroxysmal hemicrania and this is likely why the indomethicin was tried. It has a terrific success rate but for the doctor to take her off it after only 5 days because it wasn't working sounds a little odd. For me it commonly takes 7 days to start and 10-12 days before it's really effective. Mind you, it's a magic bullet after that. Please let us know how you're getting on. We care. |
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