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Graemel

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Taupo NZ
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Epilim aka sodium valproate
Aug 22^nd, 2019 at 8:41pm

Hi guys, I have been off site for a considerable time. For most of it I have been too sick to post. Even this is an effort. My CH redoubled in intensity to the point of 5 or 6 a day and some were absolutely crippling. I finally got to see a neurologist. It took around 6 months on the NZ govt system.
So she has put me on epilim at a dose of 1200mg or 600 twice per day. Also verapamil at 480mg or 240mg twice per day. I have stopped cafergot and use sumitriptan at 100mg dose. My GP originally issued 50gm and it had little effect. I also have to sumitriptan injections. they work fast. My problem is the side effects. I currently feel very unwell. Constant nausea, sensitivity to light dizzyness. TV can be an ordeal desppit altering brightness etc. I still get CH but at a lesser intensity than before. Maybe epilim s not a good fit for me? Any ideas?
I am booked for an MRI scan but who knows when that will happen under our system

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Mike NZ

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Oxygen rocks! D3 too!

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Auckland, New Zealand
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Re: Epilim aka sodium valproate
Reply #1 - Aug 23^rd, 2019 at 1:43am

Hi Graemel

Sorry you're still crook (unwell for non-Kiwis) with your CHs, especially getting 5-6 per day. Just that number of "average" CHs would be crippling for anyone, never mind with some severe ones thrown in for good measure.

For Epilim, this is a CH preventive although not one of the most common ones which can help people with a dose of between 600 and 2000mg per day, so you're on a dose in the middle of these limits.

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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That is the NZ Medsafe information for eplilim, which is well worth a read, especially around the side effects.

Common side effects (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Quote:

Common adverse effects of valproate include nausea, upper abdominal cramps, abnormal liver function, weight gain and diarrhoea. Neurological adverse effects such as tremor, fatigue, sedation, confusion and dizziness are often observed. Other potential adverse effects include alopecia, reduced bone density, thrombocytopenia, anaemia, leucopenia and hyperammonaemia.

I've highlighted some which may be what you're experiencing. Not sure about the light sensitivity. I'd chat with your local pharmacist as they are often the experts on drug side effects.

With verapamil I did an extensive post on it a while ago - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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Some people go to 1000mg/day, so there could be potential for it to be increased, but work with your doctor before changing anything.

Be careful how often you're using sumatriptan. The normal rules are no more than twice a day, but your doctor may have given you different instructions.

Where oxygen rocks is that you can use it multiple times a day. If your doctor says that you can't get in through the public health system in NZ, I can give you my details as I've had it (Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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) with it being available via CMDHB plus I know of others who have got it through ADHB.

Otherwise just get a letter from your doctor saying you can use it and take it to BOC and they will sell you the mask, regulator and you can rent the O2 cylinders plus get them refilled.

I'll also remind you about D3 - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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. Batch keeps improving it and he is now seeing 90%+ responses.

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Graemel

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Re: Epilim update
Reply #2 - Aug 31^st, 2019 at 4:19am

Hi guys, The nightmare continues. I had to go off the Epilim as the side effects just became too awful both physical and mental. Truly horrendous for me. I cannot see the neurologist till November soonest but have a phone consult early next week. So I am at mercy of GPs'! Fortunately I accidentally met a young GP Rachel. She has endorsed me increasing verapamil to see if it will eventually clear CH. I am currently taking 960gm per day in 4 x 240 mg doses. I believe I am seeing some slight improvement but CH are still with me and I am still overusing abortives. If this works then abortives will reduce. Sumitriptan tablets are ok for moderate CH but injections I have just started using are magic for severe episodes. The plan is to continue verapamil current dose for a month and if CH has stopped then to slowly reduce the dose to get best of both worlds. Side effects are fatigue and constipation that I treat with molaxole. Fingers crossed. By the way this new GP actually raised the subject of oxygen! She says it can be done but is a paper war. Alas Friday was her last day and she is going back to Sth Island where she was raised. She was like a breath of fresh air.

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Graemel CH.com Veteran Offline I Love CH.com! Posts: 105 Taupo NZ Gender:	Re: Epilim aka sodium valproate Reply #3 - Aug 31^st, 2019 at 4:20am I want to thank Mike for his personal help.
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Graemel CH.com Veteran Offline I Love CH.com! Posts: 105 Taupo NZ Gender:	Injectables Reply #4 - Aug 31^st, 2019 at 4:34am These are called Clustran and come in packs of 10. Relief occurs normally within 5 minutes. A Godsend.
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AussieBrian

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CH - It's all in your
head!

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Cairns, Qld, Australia
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Re: Epilim aka sodium valproate
Reply #5 - Aug 31^st, 2019 at 9:24pm

Graeme, I find it unbelievable to this day that GPs scream at the thought of oxygen for us but will happily give us script after script for opioid narcotics. Happily, if the paper war becomes too much, there is always the option of welder's oxygen and there's people here who will happily help with the setup.

As to the sumatriptan injectables, there's a button on the left of your computer screen marked "Imitrex tip" which is certainly worth a browse in that you can easily beat two or even three hits for the price of one.

We all know too well how hard this can become, especially when it seems the entire medical profession is against us, so I truly hope you get a win soon.

Go the Wallabies,

Brian.

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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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Mike NZ

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Oxygen rocks! D3 too!

Posts: 3785
Auckland, New Zealand
Gender: male

Re: Epilim aka sodium valproate
Reply #6 - Sep 1^st, 2019 at 4:44am

Hi Graemel

More than happy to help, anyone who has CH knows just what it is like and will do what they can to help others who have CH too.

Great to see that you're off Epilim as it clearly was not the right medication for you due to the side effects, no matter how well it worked on the CH. Hope the side effects wear off soon.

Jumping to 960mg / day of verapamil is quite a jump, remember it'll take 7-10 days or so before it is effective. At that dose level it can have quite an impact on your blood pressure, so make sure that is monitored regularly, plus I'm sure that there is concrete powder in the pills so have laxatives at hand. Make sure you get regular ECGs done (ask the person doing it to look at the PR interval to ensure that it is not impacted). Splitting it across 4 doses should also help make it more effective across the day / night too.

You're correct in that if it is working as an effective preventive them the use of abortives will drop off, although you may still be in the medication overuse / rebound headache zone, so don't over do the abortives (tough I know from experience).

It sounds like Rachael is an amazing GP, whilst she is gone, you have at least helped educate her around CH so that she may help others in the future.

Keep pushing on oxygen. Remember what I did to get it (it was worth it), so it can be done. As Brian mentioned, others have used welding oxygen to good effect.

Clustran info - Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

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- these look to be sumitriptan injects.

Note - the do not use if info - "you have taken any of these medicines in the last 24 hours: - ergotamine (eg. Cafergot)".

Brian - we're luck in NZ that prescriptions are $5, so we're not faced with the same financial pressures that many face, although splitting the dose can potentially help avoid medication rebounds as you're using a lower dose. Plus it'll cut down the side effects.

How are you going on reading through the vitamin D3 info I sent? I'd also get started on that as it is currently helping 90+% of people on it, so it has a good chance of helping you.

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Graemel

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Posts: 105
Taupo NZ
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Re: Epilim aka sodium valproate
Reply #7 - Sep 1^st, 2019 at 7:42am

Thanks Mike, I have read the clustran leaflet thoroughly. Cafergot is a no no. However cafergot is off my list of medicines now. Have not taken any for a while and none left at home. It was a good friend over the years. Yes Rachel gives me hope for future doctors in NZ. She is young and open minded. Wife is looking at the D3 for me. In my current state I have to get on top of CH first. Example today 2 very severe episodes. You mention it will take a week or so for verapamil to take effect. Rachel wants me on the new dose for a month. This gives me hope even though I am not seeing much change so far. Anyway happy fathers day to all those eligible!

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Graemel CH.com Veteran Offline I Love CH.com! Posts: 105 Taupo NZ Gender:	Re: Epilim aka sodium valproate Reply #8 - Sep 6^th, 2019 at 1:22am So guys I am now into day 8 taking 960mg verapamil per day. CH has been blunted but still had a couple of severe episodes. I am a little hopeful now. Main side effect is fatigue. Physical work exhausts me. Does anyone know if I will adapt to this and feel less fatigued?
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Mike NZ CH.com Hall of Famer Offline Oxygen rocks! D3 too! Posts: 3785 Auckland, New Zealand Gender:	Re: Epilim aka sodium valproate Reply #9 - Sep 6^th, 2019 at 4:49pm Not too surprised about the fatigue since this can be a common side effect of large verapamil doses. It is possible that you'll adapt to this.
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Graemel CH.com Veteran Offline I Love CH.com! Posts: 105 Taupo NZ Gender:	Re: Epilim aka sodium valproate Reply #10 - Sep 6^th, 2019 at 5:39pm Thanks Mike. So the new battle is to get oxygen. This will lessen my use of abortives. I just want to finish this 2 week trial on verapamil.
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Graemel CH.com Veteran Offline I Love CH.com! Posts: 105 Taupo NZ Gender:	Re: Epilim aka sodium valproate Reply #11 - Sep 9^th, 2019 at 7:20pm Last night I got almost 6 hours sleep uninterrupted. It has been a while since that happened. I am currently on 1080mg of verapamil per day. Initially I could not get to sleep and head was niggling me so I took a sumitriptan tablet and then awoke 6 hours later. I can only hope to do a repeat tonight!
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