Chronic daily headache...

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Chronic daily headache...

Postby emmacos » Fri Mar 30, 2012 2:23 pm

Hi All,

My 20 yr old daughter Helen is suffering with daily bad headaches, and has been for the past two months or so! She's had an mri scan and her neuro surgeon says everything looks good, with good csf flow. But she is feeling ill on a daily basis at the moment, and feeling she will have to give up her university course as she doesnt feel well enough to continue. Ive yet again taken her back to the doctors today, who spoke to the neurologist at our local hospital, who feels these headaches are nothing to do with her condition, but that she is suffering with something called Chronic daily headache. She is now taking 400mg of Gabapentin three times a day, and she has been given a migraine medication called Imigran, which she can take twice a day by dissolving a tablet on her tongue, and other pain medication. She is pretty miserable at because of this constant head pain.

I am wondering if anyone else suffers with this on a daily basis, how long it is likely to last, and what meds you take which help at all.....

It is horrible seeing my daughter suffer daily like this.

Any help or advice would greatly appreciated.

Emma.
(Mum to Helen, cm/sm. Decompressed 2004).
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Re: Chronic daily headache...

Postby razzle » Fri Mar 30, 2012 3:55 pm

Just a thought check the side effects of Gabapentin

one side effect is Headaches ....

http://www.ncbi.nlm.nih.gov/pubmedhealt ... ideEffects
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Chronic daily headache...

Postby zenkeeper » Fri Mar 30, 2012 4:08 pm

Kinda sounds how I feel. So sorry to hear that your daughter is in such pain. As a mother I can only imagine how hard it must be to sit and watch her suffering...

Same thing here. Decompression looks good and good flow and NS who did my surgery says everything is fine... I also do not feel well alot of the time since my surgery (but also have Lyme disease) and struggle to maintain my daily stuff (like work etc..)

Only recently did I travel across the country to get a second and then a third opinion on why I have almost chronic head pain - made worse by head movement or activity.
What is now being considered by the NS's I consulted with and maybe some things for you to think about;
1. Possible slow chronic CSF leak - Will try another blood path.
2. Dural headaches from the muscles now attaching to the dura and pulling,thus altering CSF flow temporarily - A titanium plate is suggested to help reduce the pain.
3. Occipital Neuralgia from nerve damage from PFD - Gaba is good for this.

I agree with Razzle about the side effect of Gaba. When I first started I noticed more headaches - helped the nerve pain but did flare up my headaches. I back down to 100 mgs. and increased it by 100 mg. every 7 days and that seemed to help. But great thought about meds and side effects.

We are all different but my point is that sometimes it takes getting a fresh perspective on things from a different NS to get some answers. Being in chronic pain is not an answer. Maybe it has nothing to do with her CM - but then what would it be?

I have a couple other things I am looking into such as beef allergy (which I have) and its effect on the patch/functioning. I did not know I had a beef allergy prior to the surgery.

One thing I can say is I do not feel it is normal to have such pain even if everything "looks" good. Perhaps you might get a second opinion?

For pain, sometimes the only thing that helps is laying down. Sometimes heat helps sometimes not, sometimes ice helps and sometimes not. I too take Gaba but only 300 mg.s a day and find that if I miss a dose the headaches are worse, so I think it help. I take abortive migraine meds but sometimes it makes things worse. Muscle relaxers do tend to help but I do not like taking alot of meds if I need to function at work. Last resort is some sort of narcotic - but I usually opt out of that.

I wish I could offer more in terms of suggestions for pain relief but hopefully someone with more experience in that department will jump in. Best Wishes.. ZK
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Re: Chronic daily headache...

Postby emmacos » Fri Mar 30, 2012 4:34 pm

Thanks for your thoughts on all of this. I am thinking that I will take Helen for a second opinion, though not sure to who at the moment. We live in England, and I'm not sure there is the understanding here of cm/sm that there seems to be in the US. Having said that there are neuro surgeons who specialise in this area, so I'll have to get her mri scans and contact a couple of different surgeons I think.

The doctors here say they don't feel the daily headaches are linked to Helen's condition, but I don't believe that. Helen had a csf leak when she first had her decompression surgery and developed a psuedomeningocele, which I think she still has. Neuro surgeons here don't feel that needs operating on, whereas neuro surgeons I spoke to when Helen first had her surgery and was still getting bad headaches, felt this should be resolved. It seems American and English neuro surgeons hold different opinions.

Helen didn't have a patch put in following her surgery either, again this is something there are different views on too, and here in England a lot of surgeons don't put a patch in at all.

Helen also says that any activity will make her head pain worse, so she is feeling she can't really do anything much at all at the moment, which isn't a great way to live when you're only 20! She really doesn't want to give up her university course, but is feeling at the moment she may have to.

Anyway, thanks for all your comments. I think a second opinion will be our next move.

Emma.x
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Re: Chronic daily headache...

Postby razzle » Sat Mar 31, 2012 4:14 am

Tell her to try to cut back on the med gabapenitn and see what happens . R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Chronic daily headache...

Postby Gill » Sat Mar 31, 2012 8:50 am

This is a bit of an outside chance, but it seemed worth throwing in.

I have syringomyelia and - depending on who you talk to - slight Chiari malformation. I've had severe migraines all my adult life, which then evolved into chronic daily headaches several years ago. I've tried every treatment going for migraines - some significant success with Imigran, and a beta blocker called propanolol helped a lot for about a year in preventing headaches. Once the headaches became chronic, my GP dismissed them as tension headaches and untreatable. The headaches have been a nightmare at times - a severe headache every day, month after month.

Four months ago I started taking a new beta blocker - called bisoprolol - for heart problems. The very welcome and unexpected result has been a sharp reduction in the number of headaches. I still get an occasional headache when I'm tired or stressed, but the soul destroying daily pain from headaches has gone.

I'm not necessarily recommending bisoprolol - I was exhausted for a few weeks when I started on it, and it's primarily intended for regulating heart rate and lowering blood pressure. It might, though, be worth mentioning to a neurologist as a possibility, or exploring other beta blockers with the GP. There's an association between Chiari and migraine, and migraines can apparently present as something called 'transformed migraine' - typically chronic daily headaches. It's therefore worth thinking about a range of conventional migraine preventives, with beta blockers being the most common of these.

I once saw a neurologist who suggested amitriptyline for daily headaches - but my GP wouldn't prescribe it. Again, it could be worth looking into.

Gill
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Re: Chronic daily headache...

Postby reedy » Sun Apr 01, 2012 12:24 pm

Hi Emmacos, Do get at least another opinion. I've had about 8 by now, and only feel that I'm beginning to see the complexity of the issue.

There are a few of us on this site based in the UK (I'm in London) and we can give you our opinions on other docs as well. For example, I think highly of the team at the Walton Centre, Liverpool (Neal Buxton, Connor Mallucci) as do quite a few others on Chiari UK - a very supportive friendly website http://www.chiari.co.uk/chat/index.php. There is a ChiariUK meetup coming up soon. Another regular poster on both sites has had great support from the Birmingham team. I've posted extensively on my thoughts of various neurosurgeons so if you search on my old posts you might recover all that (with the caveat that everyone's experience and needs are different).
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Re: Chronic daily headache...

Postby emmacos » Tue Apr 03, 2012 2:34 pm

Hi,

Thanks for your replies.

Helen is taking almost everything you mention meds wise Gill - she's taken Propranolol for quite a while also, and has just started trying Gabapentin three times a day. She was also given Imigran last week by her doctor, and that seems to be helping quite a bit, but Im not sure if that can be taken on a regular basis or not. She has had a pretty good run, and has just in the past few wks started getting these really bad heads every day. They are very dibilitating and she isnt sure that she will be able to continue with her university course, which is upsetting her a lot!

I will mention that beta blocker to her neurologist Gill, and see what he thinks about that.

Helen's only just started taking the Gabapentin Roz so I cant really ask them to stop it yet, but Im not sure if it's really helping or not to be honest.

Good to hear from someone in the UK on here, and I would like to get Helen a second opinion, but not sure who from at the moment - I will look through your posts Reedy, as you suggest for ideas. She is currently being seen at the Walton Centre. It's such a rare condition, and its so hard to find a good Chiari specialist in the UK.

Emma.x
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