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Topiramate

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#1 Fri, 28/02/2014 - 07:57
MartinL
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Topiramate

I've just started taking Topiramate as a possible preventative treatment, (coincidentally on the same day as this new Ouch website was launched... a promising sign perhaps!).

I would be interested to hear others' experiences with this drug.

 

 

Fri, 28/02/2014 - 13:11
Kit
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Hi Martin. I've also recently started on Topiramate(T) after almost 2 months on the Verapamil and Immigran injections. My bout wasn't coming to an end 'as normal' and so the Neurologist put me on T and it has been brilliant.  I still get headaches but these are much less severe and I can cope with them without the injections and I'm off the Verapamil which were horrible. I've been on T for about a month now and I would describe the effects as a big supressive blanket thrown over the top of my CH. I think there is stuff happening underneath the blanket, it moves around from time to time, but overall it's a calm and peaceful effect.

Unfortunately the side effects of the drug (I'm on 100mg per day) can be quite severe.  The drug is primarily used as an anti convulsant or anti-epileptic drug and I feel that I've lost a lot of my mental sharpness and awareness.  I have what I call 'white outs' where i loose all track of time. Crosswords that used to take me about 20 minutes to complete now take all day or defeat me completely. Driving is problematic - I've had a couple of low speed parking shunts and unless it's urgent I'm not driving now. I loose track of time and feel woozy a lot. I also get pins and needles, dizzy spells and my appetite is down - T is used as a weight loss drug in the States. Yay!  A quick scan through the long term side effects of the drug makes for scary reading.  It's not a meek and mild cuddly little pharmaceutical pet this one.

Overall I'm happy that the CH have stopped.  I have another 2 weeks before I see the Neurologist again and we can plan a phased withdrawal from the meds. Only then will I know if I've progressed from ECH to CCH.

Apparently it's not uncommon to take T for many years.  Personally, unless my body comes to beter tolerate T then I'm not sure that I would wish to continue for much longer without a serious discussion about alternative solutions if I do have CCH. As a short term blocker for CCH it's pretty good considering the other alternatives.  

(OMG! I've just realised my attempts to abbreviate the post above make it look like I'm sponsored by Tetley or PG Tips! Maybe I'm bigging up the medicinal and weight loss properties of the cuppa! Wouldn't it just be grand if all our medical and weight loss troubles could be fixed by a nice cuppa instead? Sigh - back to reality - I drink coffee anyway!) 

Fri, 28/02/2014 - 16:51 (Reply to #2)
MartinL
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Thanks Kit for your very interesting reply, just what I wanted to know.  I'm not a regular T (as in 'tea') drinker either but would happily indulge if it was indeed a panacea!

I had been made aware of the side effects but am willing to tolerate them if Topiramate is going to stop the 'beast'.  I'm retired now so can live with most of the side effects you have experienced.  I don't drive much anyway and a suppressed appetite for a time will be good for me!  I'm so pleased to hear T seems to be working for you, which is the main thing of course,  and I do hope that when you're weaned off them you remain pain-free and have not become chronic.  I wasn't aware until now that you had to have a phased withdrawal, that hadn't been mentioned to me so thanks for that info!

So far I'm on 25mg once a day, to be increased every 7 days until it starts working or a maximum dose of 100mg twice daily.  Your post has filled me with optimism, thank you, as I haven't had any effective preventative treatment for over 10 years now.  I've just had the injections only as O2 also doesn't work for me.

Fri, 28/02/2014 - 20:03
JeremyJ
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Hi Martin,

I replied to Kit on another post last night so apologies for the repeat!

I've been taking Topiramate for about eight years for CPH as nothing else has worked, and I can't tolerate Indomethacin which is the treatment of choice. I'm currently on 200mg per day, with the same idea that I increase every 7 days as/when required. Still getting somewhere around 10 attacks per day and a couple at night, but believe me this is a lot better than it was before.

I had a sort of "holiday" from it for a while while I tried other stuff, but this is really the only thing that consistently works for me. I'll live with the side effects. Lost half a stone when I first took it.. but I think my body knows what's going on ith it now.

Topiramate has reduced both the number of attacks and the scale of the pain.

 

Fri, 28/02/2014 - 23:15 (Reply to #4)
MartinL
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Hi Jeremy

Thanks for your encouraging reply, although I have to say that if T is working for you and you're still getting 12 attacks per 24 hours, even if they're less intense, my heart truly goes out to you.  I'm EPH (non-responsive to Indomethacin) and a bad 24 hours for me is 8-9 attacks, I can only imagine how much worse yours is.

I had sort of lost faith in anything working for me, I've tried just about everything else, but you and Kit have given me renewed hope, for which many thanks.

Incidentally Jeremy, my only previous successful treatment was Prednisolone/Methysergide and I wonder if you have ever tried it?  It kept me pf for about 3 years but became ineffective around 10 years ago.

 

 

 

Sat, 01/03/2014 - 10:08
duetto
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A word of warning. The drug affects different people in different ways. With me I got depression but it developed very slowly and I was not aware, I would advise your family to look out for signs as you may not notice them.

I would sit down and be 100% occupied with my background headache all the time and have no interest in whats was going on around me or conversations, sitting in silence. I would cross the road without looking no bothered about the dangers, have no interest or motivation in anything other than my head.

 

Once off it quickly got rid of the depression.

 

Sat, 01/03/2014 - 10:17 (Reply to #6)
MartinL
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Omg duetto, that sounds grim... but as you say, we're all different and side effects will not always be the same... but thanks for the warning.  

Sat, 01/03/2014 - 10:55
duetto
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martinL

 

Hope it works well for you, some do well on it.

Wed, 12/03/2014 - 14:06
MartinL
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Only 2 weeks on Topiramate (25mg twice a day) and I now haven't had an attack since 8.30pm on Monday (42 hours), I can't believe this treatment has started working so quickly!  I have to say though that this bout has not been as bad as normal,  2-5 attacks per 24 hours, instead of the usual 4-8, I rather think that may be due to my advancing years (it's not all bad getting old!).

Incidentally, the side effects have been minimal; yeah I've felt a bit low but then I always do when I'm in bout, and perhaps a little dopey, but the one side effect I was really looking forward to, ie weight/appetite loss, just hasn't happened!

    :)   And on top of this the sun's shining!  :)

Martin

Mon, 17/03/2014 - 16:15
MartinL
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Oops... spoke too soon  :X just had a rough couple of days.

Ah well I had 4 days pf which is significant, to say the least!  Now increased daily topiramate to 75mg and remaining hopeful.

I'm off on holiday on Sunday so now trying to get a letter from GP to show the airline so I can take Imigran injections on board for the 6.5 hour flight! Stupidly thought I wasn't going to need them haha!

Sat, 22/03/2014 - 16:42 (Reply to #10)
CatherineM
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I have taken topiramate for 6 years since Dr Matharu had trid every med there was available and it cut the clusters down to 3 daily and 3 nightly.I take 200mgs morning and again at night and to start did loose weight which was no matter as I am on the large size and thats putting it politely.The pins and needles in hands and feet are on going and periodic but sadly the weight thing does not last.The benefit out weighs the other so I stick to it and as the PCT would not fund an ONS Dr Matharu discharged me.Iam under the care of The Royal Free and am now lucky enough to be using the gamma core as well.I know we are all different but hopefully this is of some use to you on topiamate now.

Tue, 01/04/2014 - 13:12
MartinL
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Thanks for your encouraging post Catherine, hope you don't think me rude in not coming back to you earlier but have been away on holiday and like to get away from the internet etc!

I'm definitely feeling the benefits of Topiramate, despite the various side effects, even having a few pf days when dosage is increased each week (now on 200mgs a day) and then just 2-4 attacks on other days/nights.

Changing the subject.... I had a worse than normal 48 hours after flying, which started with an attack during the flight; this happened to me once before during a bout, the day after I'd had my one and only GONB when I had 4 attacks during one flight! Does anyone know if flying is a trigger? I don't recall ever seeing anything on this but logically I suppose the change in air pressure would be an obvious trigger.

Wed, 02/04/2014 - 18:53
Mike
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Martin I always have an attack when I fly. I know of quite a few other sufferers who also have attacks.

 
 
 
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Wed, 02/04/2014 - 19:56
duetto
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had it a few times on planes, always when i first get in the plane the engines are running and the aircraft is awaiting push back from its pier. I always phone the BA disability line and book a seat by the window on my right side [most clusters right sided but not all] I find pressing my head against a small flight cushion against the fuslarge wall by the seat helps numb the pain a bit. They often give a leg room seat too when i explain the restless aspect.

never had an attck mid flight always just after getting on the planes.

Thu, 03/04/2014 - 10:34
MartinL
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Interesting... good tip about the BA disability line, thanks.  I usually pay extra for legroom seats (I'm 6'3") but on this occasion there were none available so I was squeezed into a little seat with the aisle on my left, my attacks are always right sided but for the first time ever this one was left sided!!!  So the length of the plane witnessed me first of all injecting and then rocking head in hands while my partner's trying to explain to nearby passengers.  All very embarrassing really.  

Thu, 03/04/2014 - 12:29
duetto
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MartinL phone asap after booking the flight earlier the better, ask for seat numbers for peace of mind and bulkhead seats, normal people have to wait till 24 hours from flight before they can book seats.

BA are very helpful, always use them for this reason.

Thu, 03/04/2014 - 22:52 (Reply to #16)
MartinL
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Cheers for that advice... I do try to go BA whenever possible (in the BA executive club for the avios points!) so will do that in future.

Fri, 12/12/2014 - 18:43
Julia7162
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I have just been prescribe Topiramate and will be starting my first 25mg dose tonight. What I wanted to know is, is it normal protocol to ween off the verapamil? as concerned my headache will get worse.

gp has finally prescribe injection, but only given 2 for a 7 day period ( as gp stated they £20 a pop and doesn't want me on them long term) I have a review appointment on 19th. Had a bad headache tonight so used one of the injections, as it's the only abortive I have now- worked within 10 mins, just feel very tired after it. 

Another question I would like to ask is: if I use my second injection, over next day or two, would an out of hours gp prescribe them for me? Or would I have to wait and suffer till Monday?

Thanks in advance

 

Fri, 12/12/2014 - 19:01
duetto
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when i came down from 960 dose of veraamil to 480 headaches did not get worse and side effect went, tried a small increase recebtly side effects came back. 480 is my max dose.

the problem with out of hours dr is the out of hours chemist always found they have to order them in they never keep in stock.

[ i always keep a few spares in my vehicle and every coat/jack has an imigran pack in a pocket incase i forget when i go out]

Fri, 12/12/2014 - 19:06 (Reply to #19)
Julia7162
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Thanks I'm currently only on 160mg morning and night of verapamil, and from what I have found out on here, my gp hasn't been following the regime, had no ECG on increase and and experiencing ch in between taking them. Gp didn't seem interested in making the dose 3 x a day and has asked that I reduce them and come off in favour of topiramide.

only realised she only prescribed 2 inj, when collected them this afternoon. So don't have any spares or fall back abortive.

she mentioned O2 but said she didn't want me lugging a cylinder around so didn't prescribe that either. And when I asked about referral to headache specialist in my area, she said there was no point at this time as they would only be doing what she is! ( I disagree) 

Fri, 12/12/2014 - 20:04
duetto
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ask the gp to view this youtube its the prof speaking to a gp about clusters.

 

when i moved home i emailed it to my new gp.

 

https://www.youtube.com/watch?v=Ir2wro32sOs

Fri, 12/12/2014 - 23:30
Mr Git
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Oh dear Julia, I'm so sorry you find yourself in this predicament, it must be very frustrating for you.

I'm sure a Trustee will provide you with the advice you need in the coming days. The best advice I can give you is to call the Helpline and run this situation past them. They are wonderful people who will be more than happy to help.

I don't know your history so it would be inappropriate for me to advise you. However, what I can do is provide you with an insight into my history which may, at least, help you to get your current situation into perspective.

Firstly, the most important thing for me was to get a correct diagnosis from an expert neuro consultant. Given that Professor Goadsby is the patron of OUCH I looked no further than him. He is based at Kings College in south London. I believe you are perfectly entitled to request a consultation with the neuro consultant of your choice. The Prof is the best and he will be able to sort out your treatment plan which, from the sounds of it, could do with sorting out! :~

As for your GP prescribing just 2 injections, I'm sure you realise that your GP did this solely for cost reasons. When I get a repeat prescription for Sumatriptan injections I get 30 injections. Surely it's bad enough that we have to suffer from this awful disease without small minded GP's making the situation even worse.

Have you asked for the Sun Pharmaceuticals version? There are a number of reasons for doing this. If your GP starts whinging about cost then point out that the Sun Pharma version is cheaper than the GSK Imigran version.

I wish you all the best and make that call to the Helpline. In the meantime, ask as many questions as you need to. Let us know how you get on. You are never alone in the OUCH family ;)

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Sat, 13/12/2014 - 17:50
Julia7162
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Managed to get out of hour gp appointment. Was rocking in agony in waiting room with Kip 6-7  (which had been ongoing for nearly 2 hours )for over half an hour after my allocated time. Gp prescribe a cartridge refil for me. This was 14.45pm. It it's now 17.45 and only now manged to find a pharmacy who stocks them.

will be  making emergency appoint with my gp and demanding that they either provide me with enough ink to cover me until I see gp on fri or that they prescribe me O2 as that is free and would be cheaper than injections. 

Also considering self referral to headache specialist as  don't think I can manage a week like this until topiramate starts to work.

Sat, 13/12/2014 - 18:35
Mr Git
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Hi Julia

I would give the Helpline a call, and listen to them as they will have a better insight into your history. However, making a lot of assumptions here, if it was me I'd do the following:

Insist on at least a weeks worth of injections @2 per day (14). Ask the GP to specify the Sun Pharmaceuticals generic version (there are several good reasons for this).

Complete the HOOF form and request oxygen (again assuming you have been properly diagnosed).

Don't mention cost, that's not your problem, but do mention BNF 4.7.4.3 where it states that the only treatment for CH is Sumatriptan injections AND Oxygen. You need both.

Explain that you wish to exercise your right to request an appointment with the consultant of your choice. If you are able to travel I would opt for the Prof.

Finally, build a relationship with the manager of your pharmacy. I opted for a Lloyds pharmacy and they are really helpful. The key is that if you just hand in your prescription it will take them forever to sort it out. Talk to the manager and ask him to call the 'Specials Department'. They can source the injections far quicker. Then, explain to the manager how often you are likely to need them and how critical the situation is. I never have to wait, my 30 injections are there waiting for me, it just takes a bit of organising. If the manager has a negative attitude then change your pharmacy.

Just to reiterate, please don't rely on my advice, speak to a Helpliner, they are the experts. Trust me, they will be more than happy to help you, they are fellow sufferers or supporters of sufferers, they are a great bunch of people.

Best of luck Julia ;)

 

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Sat, 13/12/2014 - 19:07
Julia7162
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Thanks Mr Git

i have spoken with helpline previously and they advised to get injections and O2 and see specialist in cardiff as it's closest to me.

they have mentioned all the info you have given me just now, with exception of the pharmacy. ( I will make note)

just found it difficult with gp on last visit. So felt I will see how I go... Have had really bad 2 days so far, hence visit to out of hours but I'm hopeful it won't continue, but at same time I don't want to suffer and would like a back up if I do have bad headaches. Just so fed up with everything.

 

Sat, 13/12/2014 - 23:03
Mr Git
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It's not easy Julia, CH is as tough as it gets. However, here are some positives:

Firstly, you've just encountered the best family to help you through this, the OUCH family. We're all in this together.

Secondly, you're amongst experts now, the Helpline crew are highly trained experts. I doubt many of us would be here without them. I may post like an experienced sufferer but 10 years ago I was a gibbering wreck and I wouldn't be here now if it wasn't for the tireless work of the Helpline volunteers. I won't name them because they shy away from praise but THEY know who they are.

An important point, you've rung them once.......doesn't mean you can't ring them again, I've lost count of the number of sufferers who say, 'I don't want to disturb them'! They train for this, they are there for you, they may be able to help you further along your journey, don't be afraid to call them. I did on several occasions and they kept my head above the water......

Go see the specialist and ask him/her to write to your GP to confirm your REQUIRED (not suggested) medication/treatment plan. If this doesn't work come back to us. The Prof's assistant is called Juana. There is no GP in the country who would dare not to follow her instructions. When Juana issues a treatment plan it's not a suggestion.....:O  Any problems, come back to us.

Meanwhile, dealing with now. I have no idea regarding your cycle/number of attacks. However, are you fully up to speed regarding the following:

Demand Valve

Polar Powder

Ice Cold Red Bull through extra large straws

If any of this is not known to you come back to us as it may help.

In the final analysis, CH sufferers have no choice, we have to become determined and resourceful. We encounter people on a daily basis who refer to 'problems'. What they don't realise is that their problems are not problems, they are just breaks in their normal routine. We encounter real problems. However, to us, problems are just solutions waiting to happen!

Hang on in there Julia, help is at hand ;)

 

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Sun, 14/12/2014 - 11:49
Julia7162
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Thanks again Mr Git.

still gettin used to all this... When I get a constant dull ache across my face and scalp is this the after effect of a headache or what I see as some people refer to as a background or shadow? Mine go on for hours!

Sun, 14/12/2014 - 12:21
Mr Git
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That's definitely something you should discuss with your consultant.

We're all different, unfortunately there is no 'one box fits all'. My gut feeling is you need to get your meds/treatment plan sorted, and the first port of call is the consultant.

I suffer from fairly straightforward/typical CH (if there is such a thing). I get an attack and I abort it with a combination of Sumatriptan injection and oxygen delivered via a Demand Valve at 200 litres per minute. The only time I have ever experienced anything different was during a period of remission when I experienced what I believe are referred to as shadows which I could get rid of with oxygen alone.

I firmly believe the reason that period of remission was 'trashed' was because I foolishly took a course of steroids at the end of my bout which wasn't necessary (the bout would have ended naturally on it's own). This is why I'm trying to steer you down the route of seeing the right consultant as soon as possible, as for all you know the medication you are taking may be inappropriate. I'm not saying it is, I'm just saying getting it checked is high priority.

In the meantime, getting oxygen as fast as possible can only help as it is good for shadows. There are some key tips on its use so when you get it best ask for further advice.

I'm sorry there is no quick fix. It's a bit like building blocks, you need to get the right foundations in first, which is not easy as this normally occurs at a time when you are suffering the most.

Time to unleash the forceful Julia, but try to keep smiling ;)

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Sun, 14/12/2014 - 14:54
duetto
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I too get that dull ache in the head lasts for hours, once the cluster kicks in and you hit the imigran and oxygen it goes to the next day, strange on odd days with no background headsche feel full of energy almost hyper till cluster hits. ones that come without a backgrond headache first seem more severe.

Sun, 14/12/2014 - 18:55
Julia7162
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How long do you put the red bull in the freezer before drinking it?

Sun, 14/12/2014 - 21:01
Mr Git
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Hi Julia

You don't, you just put it in the fridge. It doesn't have to be Red Bull as it is quite expensive. There are cheaper alternatives. Each supermarket has its own named version e.g. Sainsbury's Blue Bolt. However, if you can afford it I find Red Bull to be the best. Just a standard sized tin. Don't get me wrong, I can't stand the stuff. I hate the taste and what it probably does to my body. All we need is the Taurine fix and I would do anything to take away the pain. Don't have more than one a day so save it for your worst attack e.g. the midnight red-eye. Use extra large straws. You can pick up a pack from IKEA amongst many other places.

Action on an attack:

Inject Sumatriptan

Suck cold Red Bull through large straw as fast as you can.

Instigate oxygen preferably via a Demand Valve

Apply cold compress to head. Polar Powder is best. Packet of frozen peas wrapped in a wet flannel is just as good.

Hang on for dear life :(

I must add again (I'm sorry, I know I'm being boringly repetitive) but we are all different. What works for some might not work for others. As I said, I am typical basic CH. A very good friend of mine suffers from the most unbelievably complicated complex mixture of primary headaches. I could never begin to understand the complexity of my friend's condition. My suggestion might be the wrong thing for a different sufferer. This is why seeing the right consultant is so important, to unravel exactly what condition you have and how best to treat it..

I doubt whether any of my suggestions would harm you (apart from the caffine!) so hopefully they may help in the interim.

We're all with you Julia......

"When you come to the end of your rope, tie a knot and hang on."

Two very wise men once said this........

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Sun, 14/12/2014 - 21:32
Julia7162
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Thanks again

Tue, 23/12/2014 - 14:43
Mike
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Sean (Mr Git)

Great advise, well done mate.

Mike

Chairman OUCH UK

 
 
 
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Tue, 23/12/2014 - 16:41
Mr Git
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Thanks Mike, I have a great teacher! ;)

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Mon, 16/02/2015 - 23:32
dhsykes
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I was suffering from both chronic and episodic forms, on Verapamil at 240-240-320 every day of the year plus oxygen to abort overnight attacks that were waking me at 3am every night.  Nasal Triptan for episodic nasties.

Started taking Topiramate just before Xmas and now on 50mg am, 100mg at night.  No more chronic headaches, no more waking up at 3am and my Verapamil dosage down to 160-0-160.  Can't seem to eliminate it completely yet cos get shadows if I try.  Only side-effect I have noticed is that I drift off nicely to sleep and wake up feeling refreshed, which never happened before. 

Now waiting to see what happens with the next episode.  Expect to have to up the Verapamil again but will be interesting to see by how much.

Thu, 19/02/2015 - 10:12
Val
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dhsykes

Bit puzzled when you say you suffer the chronic and episodic forms, did you mean at the same time?  Or did you mean [you probably did!] that you were chronic and then became episodic or vice versa?

Val

Thu, 19/02/2015 - 17:54
Liz H
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This is my first post on OUCH...and feeling a little nervous for some silly reason.

I was diagnosed with CHs eight years ago, one every night at seven on the dot, terrifying and agonising and initially put down to a bump on the head. If only. Slowly and painfully I've journeyed - along with my beloved family - from ECHs to CCHs. I now haven't had a break in over a year and in November, after months off work, I lost the most perfect and adored job...and all the joy that had come with it. Things seem bleak.

Versatile, Methysergide, Occipital blocks and chronic Lithium toxicity have seen me on my way, all without any success. I use four Zolmitrptan sprays for the nine or ten 'heads' per day, two full tanks of Oxygen and for the last six months Topirimate, 100mg AM and PM. I also pump myself full of homeopathic remedies, have tried the acupuncture, reflexology, massage and am currently starting Cognitive Behaviour Therapy. 

Although I haven't wanted to start the anti-depressants...it feels like the end if I do...they're on the shelf waiting. I am so sick of painting on a smiley face. This week the tears haven't stopped, and I feel evil... Is it the nasty cold? The fact my eldest son turned18 last Friday? The chronic fear of and lack of sleep? Is it the drugs? Or just my poor bad luck at having this constant noose around my neck? I can't write or read (my two favourite non-human things) I panic when I have to go out and avoid having to by myself. I used to love life...now I feel like I've ruined it, and my gorgeous family didn't even get a say in it. 

Now I've depressed you all and I'm sorry...but it was good to get it off my chest. Thank you.

Liz H

Fri, 20/02/2015 - 08:36
Mr Git
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Hi Lizzie

Welcome to the forum.....just sorry you find yourself needing to be here.

Firstly, no need to feel nervous, we're all in the same boat and the OUCH family looks after it's own!

Have you thought about calling the Helpline? You won't regret it, they are a great bunch of people, please give them a call, they can help. The number is 01646 651979.

Are you under the care of a good neurologist? Is he or she on the 'good guys' list? Run it past the Helpline, they may suggest you request a referral with a different neurologist e.g. Professor Peter Goadsby (our Patron) and Dr Juana Marin at King's College in south London. Sounds a bit daunting but I can assure you they are the nicest people you will ever meet.

Make that call Lizzie, you won't regret it.

Help is at hand. In the meantime, try to keep smiling.

Take care

Sean

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Fri, 20/02/2015 - 09:50
Val
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Hello Lizzie

Welcome aboard, but sorry that you have to be here because you are suffering so much.  I agree with Sean, give the helpline a call, all the volunteers are sufferers or supporters of sufferers and have a wealth of understanding of what it is like living with CH.  I was where you are once and I've come out th eother side.  I am chronic, but with a good neuro and eventually finding a treatment that improved my life I am in a good place.  the only way is up Lizzie!

 

Fri, 20/02/2015 - 10:20 (Reply to #39)
Liz H
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Joined: 19/02/2015 - 16:59

Wow, I'm a little lost for words. Thank you for you message Sean, it really does mean so much...you know, after eight years I have never actually spoke to anyone with CH. Even many Doctors don't seem to have heard...one once handed me a book,she'd had to look it up, which she then gave to me to read. It was the diary of a sufferer who had eventually committed suicide, "ah, the suicide headache"  she seemed quite interested then...I left thinking I'd be dead in weeks. Thankfully that was years ago...but I've met similar since.

To be honest, I don't know why it's taken me so long to join OUCH...I think maybe I was coping better. My Neuro is Dr Weatherall at Charting Cross, who I'm very happy with...especially after five years with my previous. That didn't go so well...the Lithium poisoning being my last straw...my sense of taste is still a bit off and the shakes took six months to subside. Lesson learned.

Am going to be brave...not great with phones...and call the helpline. I CAN do it and I will. Again many thanks. Isn't it funny...I haven't felt this positive in a while, clearly I just needed something from someone who knows...

Big smile

Liz H

Fri, 20/02/2015 - 12:07
Val
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:bigsmile::bigsmile::bigsmile:

Fri, 20/02/2015 - 15:03
Mr Git
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:bigsmile: from me too.

Great Lizzie, go for it and make the call.  All the guys and girls are lovely, you won't regret it.

I'd be inclined to keep an open mind about your neuro. In my opinion the Prof and Juana are the best (for me). A second opinion never hurts.

Hang on in there!

Sean ;)

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Fri, 20/02/2015 - 22:59
Mr Git
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Hi Lizzie

Me again. I've been thinking about what you said; "not great with phones". I've lost track of the number of sufferers who have said that, it's so frustrating.

I was in your position 10 years ago. I made the call. A lady called me back and within minutes it was like we were the best of friends, we were on the same page. The Helpline staff are wonderful people, they are highly trained and I know they are continually frustrated that some poor sufferers are concerned to make that initial first call. Frustrated because they are such lovely people who either suffer CH first hand, or who support someone who does. They understand what you are going through and have been through endless training to help. They want to help.

Anyone reading this in a similar position, please give them a call, believe me, I did, you won't regret it.

You've made it as far as this forum, be daft not to speak with someone who understands......

Make the call guys....OUCH is here for you.

Mr Git x

 

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Sun, 13/08/2017 - 23:27
malcolmmole
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Joined: 26/04/2017 - 16:26

Just been reading through and to be honest it hasn't cheered me up.

I've been bad with migraine (several types) and increasing chronic cluster for 30 years since being poisoned....

Prior to this II'd hardly been ill apart from measles (3 times.. the last time causing blindness followed by ultra-sensitivity to uv taking months to return to normal) cholera (I was the impossible one who had his jabs and lampooned the other entertainers who hadn't) and severe allergy to aspirin and penicillin (only penicillin not other antibiotics).... never needed painkillers and ate anything I liked and never suffered when all around me got food poisoning etc.

For 30yrs I've had a constant "hangover" developing to migraine attacks and cluster... a side effect of the poisoning is gradually "reacting" and allergy to food, drinks and drugs... I now only eat a dozen or so foods and react to most commercially produced foods and drinks.... ah yes, last drink 3.15pm feb 16 1989.. allergic to alcohol ever since esp fumes.... and now to eggs.... worst reaction is herbs esp thyme and oregano.

I reacted to most drugs.. took nortriptyline instead of amitriptylene, high dose codein, propanolol (beta blocker / heart) and a few other bits...... allergic to statins (v high cholesterol) react violently to verapamil (after getting to 3 x 40mg a day) and next on the horizon is topiramate.

The side effects of topiramate are making me looking towards saying NO! a big thanks to everybodies honesty....

I live rurally, I have 3 or 4 clusters most days and the bus and taxis won't let me on with more than a small oxygen (I need more)... it is 7miles to nearest shoping and an hour to town by bus.... shopping by car takes 3 to 4 hours and public transport closer to 5 hours..... I MUST drive and most roads are very busy and high speed (drive to town is by M6) so ANY thing that affects driving is a real no-no..... let alone a possibility of glaucoma.... and the wife doesn't drive because of a broken neck (long story).. and her rollator /wheelchair needs a big vehicle.

I don't know where I'm heading to... Oxygen is a game changer but 2 or 3 shops or a trip across the country to the consultant or to see my son and grandchildren all require a large cylinder and possibly 2 small ones as well... so the car is the only choice and I'm not going to risk that.

One tip for anybody, like me, who has attacks whilst out and can drive slowly in their wake....... I have driven a large "van" for 20yrs... currently the merc V-class MPV....  if someone is following a car that is slower than expected and maybe not in a straight line (no I'm not talking weaving) then most people, including police, will say "drunk driver".... if its a large van size vehicle (mine is longer than a transit, 8 seats and black windows) and driving the same way... the normal reaction is "bl**dy delivery man or bl**dy taxi... and they leave you alone.

Anyway, I wandering (its the headache) but really want to thank everyone for helping me settle my opinion on where to go from here... now I either need the propanolol back or a decent heart drug.. I'm not sure a "resting" pulse of 98 and most of the day at 140+ is that desirable

malcolm

goodnight and wheres my drugs.......

malcolmmole

Wed, 16/08/2017 - 09:10
Val
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Joined: 21/03/2012 - 15:16

Malcolm,  you might consider applying for PIP benefit?  You might also qualify for disabled tax credits etc.  Worth a chat with the CAB.

 

Wed, 16/08/2017 - 12:27 (Reply to #45)
malcolmmole
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Joined: 26/04/2017 - 16:26

TOO LATE I'm afraid

I was on disability and they changed the rules and cut me out.... not even the tribunal could help even though they could see I couldn't work normally.

Now I'm 65.... the pip etc cannot be instigated once you reach pensionable age.

Unfortunately, for most of my history, migraine was not considered a bar to employment... an assessment doctor told me to get stress and anxiety as my problem and it worked untill about 2014 when the rules changed. Chronic cluster is now accepted for pip but that is very new.... I'm not new!

so it's just a reduced pension and a fight to get a blue badge..

malcolm

malcolmmole

Thu, 17/08/2017 - 09:09
Val
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Joined: 21/03/2012 - 15:16

Take a l ook at this link to Age UK,  you are quite right that you can't claim PIP, but you can claim attendance allowance if you are over 65.  Have a read of this , you may also qualify for other benefits. 

http://www.ageuk.org.uk/money-matters/claiming-benefits/personal-indepen...

 

Hope it helps

 

Val.

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