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For Pen ...

Post  moominamy on Sun Feb 14, 2010 1:04 pm

Hi Pen

Just been catching up on some of your posts and it sounds like you are having a very tough time of it lately. If you need to chat I'm more than happy to. I know you find the phone a bit difficult when it's bad, so just call if you feel up to it.

I was thinking about your dr situation. You've said that your main dr that listens has been off long term due to family illness and you don't know when she'll be back, but I think you need to do something in the mean time. She must have a locum or tempory dr covering her work, they might be a good start. I've seen a few great locums over the years and they are often helpful because they have a new set of eyes on things.

Also, if things are so bad you cannot get to the GP practice you could request a home visit. Knowing receptionists I think you'd probably face a small battle getting one, but it's a good option if you are housebound with pain. It may also help your dr understand how bad it is and see how much help and support you need that you are not getting. They will carry pain relief with them or may be able to prescribe you something new to try, such as a muscle relaxant perhaps.

You also mentioned that your neuro (still PD?) is ignoring you. Do you have another appointment booked in to see him? I know he's pretty overworked so maybe he just doesn't enter into personal email correspondence. Not ideal though, but not unusual. If you have an appointment booked and want help preparing for it I'd love to do that with you, I have a lot of experience in navigating the NHS as a patient and ex-employee. Appointments are like gold dust so we all need to make the most of them (and, modestly, I like to think I'm pretty good at it Laughing )

There are a few other things I thought of you could consider :-

  • Maybe try the new triptan (almotriptan?) a few more times before writing it off. I know frova doesn't always work that well for you, so maybe a bigger picture will help see if almo has any benefits.


  • Did you ever try midrid? I think I mentioned it before. It's available OTC and is isometheptene and paracetamol. It works in a similar way to a triptan so you couldn't take both together, but could use it instead of a triptan. In the US they have midrin, which is the same but also has a muscle relaxant in it. You could get it on prescription too, but if you wanted to get it from a pharmacy they may need to order it in. If they've never heard of it (quite possible) tell them it is listed in the Chemist and Druggist and they will be able to order it in for you.

    The side effects I get from it are feeling a bit floaty like I'm not quite in my body, feeling like my hands/feet/head are HUGE, a strange taste in my mouth and I feel very cold to my core. They are very bearable though and it does help if I need to be out for a long time.


  • Make a decision NOT TO WORRY about MOH! Sounds so easy I know. Either you have it or you don't.

    IF you do, you know you need help to go without meds for the time needed to see if it helps. Your neuro can help with this (I can help you prepare to ask about it etc if you would like me to). In the mean time taking meds when you need them is not going to make it worse so there is no point fretting. Take them, don't feel bad, and come off them with support when the time is right.

    IF you don't have MOH, then all your worry is for nothing anyway, so no point worrying. Take the meds if they will improve the quality of your life. Try what the MAA has suggested to you perhaps, it might work. Maybe try a triptan alongside an NSAID to prolong the action of the triptan (as in treximet, but taken seperately, with the triptan that works for you). When you have support to come of the meds it should be easier and if it doesn't help them at the very least you will be reassured and can carry on taking them.


  • Think about preventatives again. Even about retrying things that didn't give you unbearable side effects before, regardless of whether they helped, your migraines have changed. A really good time to consider adding them in would be if you manage to get support to come off the abortives, as your body may be more receptive to them. But trying them at any time would be a positive step too. I totally understand that you are worried about side effects, but you are in despair and suffering badly. Hoping for a spontaneous change and perpetually suffering vs. trying something that may work - well I'd choose that bit of hope.


Goodness, this is long! I have more thoughts about non-drug things to try too, but need a break for now.

I'm so sorry you are not getting the support you need from the NHS, because it really is available, if a little patchy (although admittedly you will be expected to travel and get to appointments regularly which I know is difficult from experience).

Take care Pen

Amy


Last edited by moominamy on Sun Feb 14, 2010 1:09 pm; edited 1 time in total (Reason for editing : edited for formatting)

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Re: For Pen ...

Post  moominamy on Mon Feb 15, 2010 8:58 am

bump bounce

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Re: For Pen ...

Post  pen on Mon Feb 15, 2010 11:57 am

Sorry Amy, I didnt see this. I thank you for it and will reply, but its long and my concentration is not at the moment.
It is appreciated, thank you.

Actually I might cut and past it and pm it in bits if thats alright....

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Re: For Pen ...

Post  pen on Wed Feb 17, 2010 1:34 pm

Hi Amy, I have finally found a moment to respond to your kind post.
I am sorry for the delay. Don't think me ungrateful. It must have taken ages to put it all together, thank you.
I shall annotate for ease of us both. Hope that's
ok.

Hi Pen
Just been catching up on some of your posts and it sounds like you are having a very tough time of it lately. If you need to chat I'm more than happy to. I know you find the phone a bit difficult when it's bad, so just call if you feel up to it. Thank you.
I was thinking about your dr situation. You've said that your main dr that listens has been off long term due to family illness and you don't know when she'll be back, but I think you need to do something in the mean time. She must have a locum or tempory dr covering her work, they might be a good start. I've seen a few great locums over the years and they are often helpful because they have a new set of eyes on things. No locum, they are just working a doctor down at the surgery. Sadly my Gp's daughter died. She was 26. I am told the Dr will be returning, but not sure when.

Also, if things are so bad you cannot get to the GP practice you could request a home visit. Knowing receptionists I think you'd probably face a small battle getting one, but it's a good option if you are housebound with pain. It may also help your dr understand how bad it is and see how much help and support you need that you are not getting. They will carry pain relief with them or may be able to prescribe you something new to try, such as a muscle relaxant perhaps. I have had a house call from her. I had flu and developed a sinus infection. I hadnt realised other conditions can push migraine. She gave me extra triptans. I was refused one a few months back. Was told I have a chronic condition and house calls are for "emergencies". Come to the surgery.

You also mentioned that your neuro (still PD?) is ignoring you. Do you have another appointment booked in to see him? I know he's pretty overworked so maybe he just doesn't enter into personal email correspondence. Not ideal though, but not unusual. If you have an appointment booked and want help preparing for it I'd love to do that with you, I have a lot of experience in navigating the NHS as a patient and ex-employee. Appointments are like gold dust so we all need to make the most of them (and, modestly, I like to think I'm pretty good at it Laughing ) He hasnt replied to my emails, but I now have an appointment in April. Its early in the day for me, so I shall try to get it shifted. If not, I shall take Theresas suggestion and take a triptan the night before. Incidentally, I did make the last one despite having had a Triptan, but it was a bit later in the day.

There are a few other things I thought of you could consider :-
  • Maybe try the new triptan (almotriptan?) a few more times before writing it off. I know frova doesn't always work that well for you, so maybe a bigger picture will help see if almo has any benefits.
Why Amy? Is it likely to get better over time? It was like Narotriptan which was as if I hadnt even taken it, except the Almogran came with worse side effects.
  • Did you ever try midrid? I think I mentioned it before. It's available OTC and is isometheptene and paracetamol. It works in a similar way to a triptan so you couldn't take both together, but could use it instead of a triptan. In the US they have midrin, which is the same but also has a muscle relaxant in it. You could get it on prescription too, but if you wanted to get it from a pharmacy they may need to order it in. If they've never heard of it (quite possible) tell them it is listed in the Chemist and Druggist and they will be able to order it in for you.
    The side effects I get from it are feeling a bit floaty like I'm not quite in my body, feeling like my hands/feet/head are HUGE, a strange taste in my mouth and I feel very cold to my core. They are very bearable though and it does help if I need to be out for a long time.
I dont know in truth. I have had so much over time. They wont give me anything that is hard on the kidneys. I have a congenitial defect. They have become more concerned over this as I have got older.
  • Make a decision NOT TO WORRY about MOH! Sounds so easy I know. Either you have it or you don't.
    IF you do, you know you need help to go without meds for the time needed to see if it helps. Your neuro can help with this (I can help you prepare to ask about it etc if you would like me to). In the mean time taking meds when you need them is not going to make it worse so there is no point fretting. Take them, don't feel bad, and come off them with support when the time is right. Good points well made Amy. I do beat myself up about this. I just cant figure if I have it or not. There seems to be no way to find out. Are there some things I can measure against? How often, how many? Efficacy?? I would love to nail this one.[/b
    [b]IF you don't
    have MOH, then all your worry is for nothing anyway, so no point worrying. Take the meds if they will improve the quality of your life. Try what the MAA has suggested to you perhaps, it might work. Maybe try a triptan alongside an NSAID to prolong the action of the triptan (as in treximet, but taken seperately, with the triptan that works for you). When you have support to come of the meds it should be easier and if it doesn't help them at the very least you will be reassured and can carry on taking them.


Okay this doesnt work with the OTC. I tried it again today and they did nothing at all. With it is no help and 4 hours later nothing either. Sorry, not being negative, but no go there. However perhaps Naproxen or Diclofenac might be better. They dont seem to work on my pain at all on their own and I seem to be immune to Ibuprofen and Paracetamol. I only seem to respond to Aspirin!! maybe you know why that is with your knowledge?

]
  • Think about preventatives again. Even about retrying things that didn't give you unbearable side effects before, regardless of whether they helped, your migraines have changed. A really good time to consider adding them in would be if you manage to get support to come off the abortives, as your body may be more receptive to them. But trying them at any time would be a positive step too. I totally understand that you are worried about side effects, but you are in despair and suffering badly. Hoping for a spontaneous change and perpetually suffering vs. trying something that may work - well I'd choose that bit of hope.

This is the one suggestion I have trouble with Amy. I have such low life quality, I really cant stand to lose it again. If I can find something "natural" without side effects to try. It would be the way to go. I get the prescriptions, I have even got them filled, but I have so much anxiety for now (hence the CBT), I cant bring myself to take them. I am embarrassed by this, but I have to be honest about it and PD knows this.

Goodness, this is long! I have more thoughts about non-drug things to try too, but need a break for now.
Im not surprised. It is very thoughtful of you. I hope it didnt give you a headache.


I'm so sorry you are not getting the support you need from the NHS, because it really is available, if a little patchy (although admittedly you will be expected to travel and get to appointments regularly which I know is difficult from experience).
I have had more support in the past, but right now, I can only speak as I find. I have NO support of any kind for the Fibro and nothing from the GPs except what I research and as for. My own usually complies, the rest of the make me feel like a nuisance.
I asked one of them what her other migraine patients do. "They take their Triptans" Thats it. You take the triptans, they work, sort
ed.

Thank you so much Amy. I have tried to address all your helpful suggestions I hope you found it worthwhile trying to help.
It is appreciated.

Pen


Take care Pen

Amy Smile

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Re: For Pen ...

Post  moominamy on Wed Feb 17, 2010 6:17 pm

Would you like me to help you prepare for your next neuro appointment? Could do it over phone or email. No worries if you'd rather not, but thought it might help.

Amy

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Re: For Pen ...

Post  pen on Wed Feb 17, 2010 6:20 pm

moominamy wrote:Would you like me to help you prepare for your next neuro appointment? Could do it over phone or email. No worries if you'd rather not, but thought it might help.
Amy

Sorry Amy, did I miss that bit, it was very long, and my dog jogged me half way through and I had to start over.
Then something else occurred, not sure what so I had to start again, again.....
Anyway, I think that would be helpful yes please.

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Re: For Pen ...

Post  pen on Thu Feb 18, 2010 6:01 am

Can you give a perspective on the MOH? It is making me worry. Id like to stop.

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Re: For Pen ...

Post  moominamy on Fri Feb 19, 2010 6:28 am

Not sure I can add anything I haven't already said over the past (3??) years on the topic Laughing , but I'll try and summarise as best I can my opinion on MOH if it will help. It will still be pretty long though!

  • We are all different, and as one person might get MOH from a small number of monthly days of a med, some won't get it even taking things every day.


  • MOH seems to be a condition especially linked to people who get migraines, 'the migraine brain'. Something in our body chemistry is slightly different it seems. MOH can occur in people taking pain meds for other conditions and not migraines if they are prone to migraines.


  • All abortives seem to be able to cause MOH. This includes triptans, aspirin/NSAIDs, paracetamol/acetominophen, caffeine, codeine, other opioids, ergots/DHE, isometheptene etc etc. Some are more or less likely but none are exempt.


  • The quantity to take per month to be 'safe' from MOH is just a guide and varies from medication to medication BUT my opinion is that in some individuals the quantity is more, and some it is less than this guide. And some don't seem to get it at all. (I get a worse migraine after one dose of a triptan, not true MOH by standard definitions, but it is a rebound type of effect).


  • Combinations of medications might make MOH more likely for some people (eg paracetamol and codeine preparations are often cited). But added to this is the use of multiple different meds contributing to MOH even if the 'safe' level of each one is not exceeded. So doses of triptans, plus some OTC aspirin/caffeine/paracetamol over the month might just add up to give MOH together even if 'safe' numbers of doses of each are taken. (The IHS criteria state more than 10 days a month of any combination, link)


  • The nature of the headache caused can vary enormously - for some it seems to be very migraine like, for others it is very different to their migraines. It can be both sided or one sided, can vary throughout the day etc. Basically headache type is no predictor of MOH or not.


  • MOH does NOT have to be a constant or daily headache. It doesn't have to bear any discernable pattern to medication ingestion (ie you could have 5 days with no meds and still have MOH). It is simply defined as an overall worsening in headache frequency (to >15 days/month) when abortives have been used above certain levels for over three months that improves upon stopping the abortives.


  • The ONLY way to find out if you (or anyone) has MOH is to stop taking ALL abortive medications. I would also stop all caffeine at the same time especially if caffeine containing meds were taken. Recommendations are to stop the meds for two months, but most people see benefit in two weeks if they are going to it appears.


  • You know you will struggle with stopping meds on your own so I would suggest waiting until you see your neuro and discussing it in terms of a possible inpatient stay in hospital (the National often give people IV DHE to help them through this time, and I have heard of steroids being used too). Not sure if PD does this but he may do something else. It is also a great time to introduce a preventative as they can be less effective in the presence of MOH.


IF you had MOH and stopped the meds you could expect your migraines to revert back to their pre-MOH state upon stopping abortives (not neccesarily go away altogether) but would need to give it a good wash out time.

IF you went for two months without any abortives and no improvement you would very definitely be able to say it was not MOH. Your dr may be happy for you to go for a shorter period of time but 2 months is the IHS criteria for the definition. 2-3 weeks would probably be long enough to tell for most people, but not all.

In the time before you see your neuro I'd just not worry about it. As you've said, you know you cannot do this alone. Instead I'd resolve to bring it up at the appointment as your no 1 concern. Maybe concentrate on which (if any) preventatives you'd be happy to take. Could be one you've tried before. I think if you bring up that you'd like to try 'X' after coming off abortives it would be a great indication to your neuro that you are determined to work at this with him and don't expect it all to just go away or him to just throw ideas at you that you then don't act upon because you are uncomfortable with them.

And I know you suffer terribly with IBS and FMS, so maybe look at preventatives that would possibly help all three (or at least two) conditions. Gabapentin or pregabalin (lyrica) spring to mind. If you want a better quality of life you have to seriously consider the trial of preventatives IMO.

There are the non-drug options too, I still haven't written about that have I? I will try and do that by Sunday.

Take care and hope you are having a better day. I'm being kicked like crazy here. I've just taken a video on my phone of my vibrating stomach!

Amy

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Re: For Pen ...

Post  pen on Fri Feb 19, 2010 6:53 am

Thanks very much Amy, will digest with help of Hub.

My son kicked so hard I was bruised on the outside from the inside.
He was 24" 9lb 9oz and his head was 15" circ.
He is now 6 ft 5 ins. (same as Stephen Fry, whom he was in Harrod's food Hall with!!!)
His own son is now 4 months old and weighs 18 lbs.....

Nothing to do with me.....any of it.
My husband and his brother are both 6ft 4.

The kicking is "exciting" isnt it!!!
Do you know what you are having??

P

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