Hello from London

I've been hanging around here for the last couple of days but I've been too shy to join since you've all had this condition for much much longer than I have, and anyway I'm in the UK. I haven't found many people like me over here, if there are they aren't talking to each other on the internet like you are so I hope you don't mind me joining you.

I'm 28, I work in publishing (though I'm off work at the moment I plan to return shortly and learn to work with the headache), I live in London with my husband and two cats.

Like most of you, one day I got a headache, in my case, 07/07/07, I woke up with it in fact, and it hasn't gone away yet.

I've been diagnosed pretty fast. The NHS consultant wanted to delay a scan for three months (so that I still wouldn't have been scanned now) and said it was my hormones, said it would just go away if I stopped using the contraceptive injection, and shortly it was shown that it wasn't and I wanted to go private, so my husband put me on his company medical insurance, I made some enquiries as to who made headache his specialty and shortly went to see a man who scanned me immediately, seemed very confident of curing me fast, and agreed to do a raft of treatments to try and get me back to work as fast as possible. We started with Topamax, Physiotherapy, acupuncture, and Botox which he said worked for about 50% of his patients.

Botox didn't work for me, I seemed to react badly to the first lot of acupuncture, but we're trying again, and I haven't yet seen any results from the Topamax after 6 weeks, but my consultant says it sometimes does take a good long while to start working. He wants to give that another month and then switch me to another drug. The physio has found a pinched nerve in my neck which makes turning my head painful, and work on that doesn't seem to transfer to my headache nor to last for very long. The result of all this is that since the treatments didn't start to work when we got to it quite early, chances are this headache is going to hang around for a while, the consultant says up to about a year.

That wasn't really a shock, I suspected it, but I stopped being in denial then. I still can't even think about what this does to all my carefully-laid career plans (and I just got married in May, can you imagine?) but, hey-ho.

In some ways, this will not be new ground for me as this is now the second chronic pain condition I've had in my life (I had a bad back from a muscle defect make itself known suddenly when I was 13 and cause me a great deal of grief for about two and a half years until we found the right doctor, an orthopaedic physician who improved it greatly using local anaesthetic and sugar solutions so that it gave me very little trouble after that). In a way this helps, I know some of the territory, and that I'm a strong person who can cope with it for a second time, and on the other hand it's rather frightening to be facing this again because I know how bad it's been before and pain scares me because it hurts. And pain in the head is much worse than in the back.

So, I've joined you to talk about things and try to get to the bottom of what might cause this ghastly condition. I hope we can be of help to one another, and I'm very glad I found you.

This too shall pass.

Janey

I have also been told that I have a heart murmur. ECG fine but am being referred to a cardiologist for further investigation so am scared about what is going on in my body, but hoping there is a link between my heart and headaches. At least then I will know and maybe it can be treated.

My whole life feels on hold. I am very down about all this. In the past I have had a few good spells (perfectly fine, no symptoms), but the past few months have been worse than ever and I don't know why. And I drive myself mad analysing what is going on inside my body, why it is, and frustrated that I am suffering like this, when everybody around me takes feeling well for granted!

I worry about the future. I have a loving boyfriend, although he finds it hard to know what to say sometimes. I live with my mum, and she is very supportive as she has been through the whole 7 years of this with me. Altho she is just as upset and frustrated for me. But I do fear for the future, moving in with boyfriend, marriage, children, all that sort of thing. If I didn't have this hanging over me, life would be great.

Anyway, now that is all off my chest...!! Good to talk to you, and I hope you feel better really soon. Sam x

I am glad you were able to get on your husbands insurance and get in to see a headache specialist. They are extremely valuable since this is a relatively rare condition and most doctors have no idea how to treat it. Even ones that do know how to treat it have trouble sometimes finding something that works since each patient is different. It may take a lot of different medications before you find one that works for you. I can't remember how many I have tried, but it is a lot.

Topamax is one of my current meds, and it does take a long time to get working. I think it didn't start helping me until I had been at 100mgs for a couple weeks. Eventually it did help a little with the pain for me but different people respond differently. My neuro said some people don't respond until they are nearly to 200mgs or so. Other people just don't get any help from it at all. It reduced my pain levels some, but not as much as I needed so I take other medications as well. My headache is still not well controlled.

I don't know if it helps you to have been in chronic pain before or if that would just make it worse, knowing what to expect. Probably you have learned a lot about how to live with pain and those skills will still work for you even if the pain is different. I am really glad to have you on the forum. We need to stick together no matter what part of the world we come from.

Hi Sam, I hope you are able to get in to the cardiologist soon. The waiting probably drives you crazy....it would me anyway. I hope when you finally do get in that the appointment is helpful and can answer some of your questions. It would be really great if they have a treatment that would make your headache go away but that might be too much to expect. Let us know how it goes.

Post edited by: MaryR, at: 11/09/2007 15:21

Sam, I'm so sorry to hear that you are down and worried, though of course I completely understand it. I have found previously that these periods of depressions come and go through the condition, and that Cognitive Behavioural Therapy helped me a great deal in dealing practically with negative thoughts, much more than just 'talking about it' which can just prolong the feelings of depression. If you want direction to some information or books about CBT, please let me know.

I've had a good day today woth the headache - it may be that the acupuncture I had on Thursday has had a bit of an effect, though I'm being very cautious about that...

Today was a bit hard since I went to Oxford to see my brother in hospital (he has Crohn's and had some surgery, he's had a really awful time with it these past 15 years, not to mention just about every other major life crisis you could mention in the last year or so alone) and it was really good to see him. I was nervous about going so far from my flat since I haven't done since this started, preferring to remain nearby in case I wanted to dash home with a flare-up, but obviously I had to go and see my brother and fortunately all went very well. That in itself is a major relief, makes me feel very positive about things like starting work again, and that some of the treatments might begin to reduce my pain.

Thank you Mary, particularly, for your reassurance about the Topamax - my consultant can be perhaps a bit hurried in his consultations with me, and I'm feeling less than my usual assertive self so I don't ask as many questions as I know I should (I'm going to take my mother next time, I think. She'll scare him to death

Thanks for the confirmation, as it were.

This too shall pass.

I am glad your venture to see your brother went so well. It is scary to go out when you aren't sure how your pain level will be.

As far as topamax side effects, for me they were mostly just annoying (hands and feet falling asleep a lot, some short term memory trouble) but not serious enough to warrant stopping. It helps if your dose is increased very slowly (as I think yours probably is from your previous post). Oh you may also notice that you are shedding more hair than usual. For some people it was a lot more, for me it is barely different than before. I don't think that is on the side effects list, but several of us have noticed it. I hope it works well for you too.

Slightly more worrying for going back to work is that it's difficult to concentrate, and the short-term memory loss is definitely happening - I can't remember details of what people have told me five minutes later, just clean gone. I'll just have to write everything down religiously.

It's clearly a very serious strong drug! (which is reassuring in a way)

Welcome to our little world... I'm the mom of a 17 yo dd who has had NDPH for 3 years this coming February... She is doing okay with the headaches, usually a 3-4 each day and occasionally worse when she doesn't get enough sleep. She has just learned to deal with them because no meds that she's tried worked... She went the Topomax route and it was not good. She totally lost her appetite and would hardly eat anything all day, and her short term memory was gone. She couldn't even go to school any more because she could not remember anything. She was on 300 mg daily... when we finally got a second opinion, the neuro told us he was amazed she even knew he own name! It took 3 months to ween her off it, so she had to be off school almost 6 months in her sophomore year of high school.

Please just make sure if you aren't comfortable about something, go to a different doctor... get a second or third opinion! It wasn't till we saw the 3rd neuro in Pittsburgh, who is supposedly the best, that she was finally diagnosed with NDPH... after I started reading up on it, everything clicked. Yep... that's definitely what she had! The thing that made me the maddest was that the other two nero's didn't know what it was! Excuse me??? Grrrrr!

Anyway, welcome and I hope you are able to get the support you need here.

Bev

OK - I'm on 50mg of Topamax twice a day, which is after two increases, two weeks apart, so a reasonably slow increase I think? (The topamax website advocates increasing the dosage each week - eek!). We're sticking there, and as I say, if the doctor doesn't think it's kicking in he's switching me to something else.

I only started to notice any side effects once I reached this dosage, and even then not right away (by then I'd got used to feeling crappy generally and was ignoring it, I always have poor circulation in my feet, and was ignoring the fact that I couldn't concentrate on anything by reading murder mysteries and bonkbusters which don't require me to think too much).

So, as above, my side effects are generally minimal except for the general forgetting things and not being able to concentrate, and I've noticed the effect on my writing (I leave things out that I meant to say, and I'm less clear than I would be normally), but I'm still pretty high-functioning because relatively speaking this is a lowish dose of Topamax.

Your poor daughter, BevS, though - much sympathy, a rotten thing for a young girl to have to go through. She's incredibly lucky to have a Mum like you, and I'm absolutely certain she thanks providence every day for the fact of you. My own Mum was absolutely brilliant when my back went wrong in my early teens, I know how very grateful I am to her, and to still have her now this has come along - I honestly don't know what I would do without my Mum.