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31 Aug, 2011 - 10:27 pm

G'day all,

When I was first diagnosed with CHs most of my attacks were during sleep at exactly the same time. I knew that if I drank while in a cycle I would almost instantly get a CH. A dead give away was the temporal artery on the left side, it would be a few millimeters out of my head and pulsing. Prior to starting this cycle I was able to sense the temporal artery beginning to pulse but without protruding from head temple or any pain as if it was a warning sign. Does that make sense to anyone?

I'm starting to realise that my CHs are probably getting worse as I rarely got them during the day. Hopefully this is just another side effect from my recent surgery. Does anyone else have any 'tells' prior to a cycle starting?

Cheers

A

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01 Sep, 2011 - 12:03 pm

Hi,
I don't have anything like that, but the blood vessel dilating is what causes the pain as it pushes on the trigeminal nerve. Alcohol dilates the vessels and that's what you need to stop happening in order to prevent a CH. Cafffeine and imigran restrict the vessels, as does an overdose of oxygen, which is why they are effective treatments.

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01 Sep, 2011 - 7:39 pm

Hi All,
i too used to get the artery bulging and the pumping sensation on the R/H/S of the head and also a small lump used to appear on the front of my forehead which was another indication i was getting a CH. I remember when i was a kid and getting them in primary School i would get the other kids to feel it so they could feel the blood pumping around.

These days there are no warning signs that i have one coming on maily because the shadow is always there it's just the degree of pain that varies. I can go to sleep ok but all of a sudden wake up with a 10/10 and no warning.

Matt

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01 Sep, 2011 - 8:02 pm

I used to get the lump on the front of my forehead as well. I used to feel as though I could manipulate it! I had forgotten about that. As the attacks became more frequent and more severe it diminished.
Heather

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03 Sep, 2011 - 5:22 pm

I to get the pulsating temple. when i run my finger over it it feels like 4 times the usual size. Sometimes i have just stood in the shower holding ice on it and just pushing on it to restrict the intervals of pain. (crossed my mind once to cut it) amazing how the mind works.

I have also been feeling it lately which is a worry. I have never really noticed it much before a cycle only during. Im almost 12 months without CH which is my longest time between cycles.

As soon as i feel the vain start to swell i drink a large enery drink. this works well sometimes during the day. nighttime this does not work.

Hope you are pain free soon

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13 Sep, 2011 - 11:03 pm

I've absolutely suffered from exactly the same symptom to the point where it finally proved to my boss at the time that "no, I wasn't making it up and I didn't have a migraine" but my head was literally exploding!

Thank God I don't work for that bitch anymore. The company went into administration three months after I left.

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23 Sep, 2011 - 11:41 am

I get the pulsing and the artery raised on the effected side (right)
When the pains are going to get worse I have noticed I get tremors aswell, my hands shake etc but this is even without the pain, then next it may hit. I also use to get lumps on the back of my head come up, doctor said they were lympnoids bc pressure ?? Sore to touch and only happened when pains were constantly bad. My effected eye's pupil also goes smaller and of course the good ol' eye lid droop and puff up. I get swelling on the effected side up in the top jaw near the ear and the eyelid.

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28 Sep, 2011 - 5:09 pm

not that I noticed!

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29 Oct, 2011 - 4:00 pm

This is an interesting subject and I was discussing it with my wife and she said that I have a masive tell that I had never noticed or identified as a tell.
After it was pointed out to me it was so obvious but I get severe hayfever, and once my cycle actually starts the hayfever stops but my wife pointed out that the hayfever stops about 3-4 days prior to my first attack, and upon reflection she is absolutely correct.
I guess for me it means that sufering hayfever on a "daily" basis it actually a good thing as it means that the devil has not got me in his sites at least for a few days .
Chris

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03 Nov, 2011 - 9:23 pm

Does anyone suffer from neck stiffness and pain deep inside behind the ear during the 'shadowing'? How do you manage this??? It is all on the side that my CH occurs. I used to think this precipitated my headaches, but neuro suggested other way around. I am so very thankful to be CH free for 5 days, but the pressure of shadowing is tiring, and fear it is building for another CH.
.... disheartened, km

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03 Nov, 2011 - 10:12 pm

Hi km
This is all the sort of things that i go through when using the prednisolone and as much as it annoys you it is so much better than the option.
The stifness can actually be reduced with a gentle massage but it has to be gentle too hard hurts like hell and another option that works for me is a heat sausage full of rice i think and I heat it in the microwave and wrap it round my neck.
I do find that nuforen zavance and tramadol will actually ease the shadowing considerably when on the prednisolone and even panadol can help.
This also eases the neck pain as well in particular the zavance does a good job on the neck pain
I agree that it can be quite exhausting but again as bad as it is it is still miles better than the option
I really hope the Pred works for you in the way it works for me.
Stay strong !!
chris

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03 Nov, 2011 - 10:30 pm

Thanks Chris, sorry to whinge, u are so right, a million times better than the alternative, just tough going and with a young family, but I am very thankful for a supportive husband and the info we have gained from this site. 2 days left on pred and hoping, hoping, hoping like heck they don't return.....Have been reading about excluding sugars etc... have you have any success with dietary changes???.... I have had no hayfever during this episode (usually suffer moderately and take anti histamine daily during spring....) how weird. cheers, kerri m

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04 Nov, 2011 - 4:01 am

Hi Kerri,
yes, dietary changes can make a huge difference. If you cut out processed foods and eat raw and/ or unprocessed foods, your whole system starts to detox. I have found it a huge help. Cutting out sugar from your diet is also a big help, but simply eliminating processed food will cut a huge chunk of sugar from your diet. In particular, avoid foods containing High Fructose Corn Syrup, a highly processed form of sugar not naturally sourced, and found in a startlingly high number of foods. There are some posts about sugar in other sections, just be aware some of the information is utter nonsense. As always, do your own research from as many different sources as possible.

I do hope prednisone works for you, but be aware it might not. Chris has had good success with it, I did not, so don't be disheartened if your results aren't ideal.
cheers peter.

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05 Nov, 2011 - 9:59 am

Thanks Peter. Today was my last morning on pred (down to 1/2 tab) and woke with terrible terrible head pain. Each time it is so unbelievable, I just can't actually believe you can hurt that much and come through it. Thank God for the imigran but it does take time and leaves me utterly exhausted. Does this mean the pred is not working?? I had 6 clear days...... Doc said if I get another one, just start back on high dose of pred.... Thinking of going back to neuro? We will read everything on food and fructose corn syrup, thanks for that advice. I don't each much processed food, but will go entirely raw/unprocessed if need be. This bout nausea is very bad so not eating much anyway. Reading all these posts is such a support. Thank you all for sharing. kerriThis post was edited on 05/11/2011 at 9:59 am

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05 Nov, 2011 - 10:42 am

Hi Kerri,
Yes, this is a vile ailment, no doubt about it. There is a school of thought that reasons it's to do with the body being burdened with toxins- this then knocks other things out of whack, principally the hypothalamus, and so the cycle goes on. No-one really knows.

When I was first diagnosed, my neuro put me on dexamethasone - a nastier version of corticosteroid than prednisone- at 30mg per day for 6 days, then 25mg for 5 days down to 5mg for ten days (total 30 days) then when I didn't respond I had to do it again. I'd already put on 18Kg in the first two weeks and felt like utter crap but stuck at it. Basically all it did was alter my cycle so that I didn't know when an attack was going to occur. So it didn't work for me. It does for some people, but everyone's different.
My neuro didn't tell me about Imigrin, I found out about that from this site (thanks Roger ) .

Drinking LOTS of water, avoiding processed foods, lots of fibre to keep things (ahem) moving, these are all things that people over time have said helped them.
Have you looked into getting a supply of oxygen? Seach through the forum for posts by Barry T Coles, our resident guru on oxygen. He swears by it, and it's by far the least damaging, effective treatment, if it works for you. It's important to use it properly though. Most medical literature says to use 7- 10 litres a minute, but almost any CH sufferer will tell you that's nowhere near enough, levels of 15 to 25 litres per minute are required to knock out an attack, and that the technique is especially important.

Do go back to your neuro and discuss your case. Don't pretend it's not happening. There's a huge range of treatments out there (none of them are a cure though), you just have to keep seaching until you find whichever ones work for you.

Do pay attention to what medications are prescribed for you Kerri. Ben, Matt, Alex and others will tell you it's all too easy to get hooked and cause yourself even further grief later on. Far better to not go down that road if you can avoid it.
Good luck to you, and fire away with any questions.
best wishes peter.

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05 Nov, 2011 - 3:19 pm

Hi Guys
Just a comment re dietary changes - eating as Peter suggests causes the body Ph to rise (ie the body becomes more alkaline) - which I reckon can help reduce both the frequency and intensity of attacks - Barry has posted some great info on the subject and it's well worth taking a look at.

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05 Nov, 2011 - 7:34 pm

Just discovered members diaries, oh my goodness! My heart just breaks reading......
How long do 'cycles' usually last for? If my last one was 3 weeks, (a couple of years ago) is that a guide?....does that mean this one will be? Seems I'm not the only one afraid to go to sleep. I am managing the attacks with cold packs/showers, imigrin and riding it out, but how apart from prednisolone can I break this cycle and stop this shadowing??? Am learning so much but still feel at a loss..... kerri m

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05 Nov, 2011 - 8:26 pm

Hi km,
it varies dramatically with some sufferers being chronic and never getting any relief at all.The cycle I just finished was 14 weeks in total which is around the mark for me with mine normally 10 - 12 weeks give or take a week or 2 and mine until recently have been one cycle a year norrmally atarting late winter early spring
I truly consider myself one of the lucky ones but others can have several cycles in a year and some have cycles that can last for 5-10 months or longer.
I am also lucky because prednisolone has worked for me and various preventatives have worked for me as well at various times.
Your last cycle of three weeks could be the term that yours run all the time but I hate to say this but they are variable and could be longer or shorter.
I certainly hope for your sake that they don't last too long, but you do have to be prepared for the possibility they may.

Chris

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05 Nov, 2011 - 9:28 pm

Thanks Chris. Will wait and see. Do you consider yourself in a 'cycle' when you are still having the shadowing, or just active CHs?
km

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05 Nov, 2011 - 9:45 pm

I dont consider myself out of cycle until I have had about a week with nothing at all including shadowing.
Some of the shadowing especially when coming of the prednisolone can get up to the level of a 4-5 CH but it is different and you can tell it is not a CH despite its severfity it is a bit more all over than a CH
Chris

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05 Nov, 2011 - 10:01 pm

Thanks Chris. Still working all of this out! Counting my blessings as I read the accounts of others, who are affected much more considerably than I am. All the best, km

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09 Nov, 2011 - 9:24 pm

Ah, had a good week, so very thankful.....it is hard to know what is working though, so guess I am going to keep it all up.
I am setting my alarm early ( 5.30am 'waking up before my headache' as I say to my hubby ??!!!) having steroid, icing my neck, panadol, and getting off to a slow but good start. Haven't eaten one dot of processed food all week, salad, vegies, water, water, water.... how do you know (isolate) what exactly is doing the trick?????... or just keep it all up if it seems to be working???? Either way thankful for a much easier week! Wont post 'green' until off the steroids I guess km

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09 Nov, 2011 - 9:49 pm

Hi km,
That is great knews.
My money is on the prednisolone working for you.
Hopefully it is as if it works this well there is a chance that it has suceeded in aborting your entire cycle..... I really hope it has done this for you.
This does not mean it will always work and you should always, with every cycle, try new meds and see what relief you can get before you head back toi the prednisolone, but it is comforting to know that it is there and what it can do for you .
You just want to minimise how often you use it as much as possible.

Chris

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11 Nov, 2011 - 6:23 am

Hi km,
maybe put it down to the combination? Don't think of the diet change in the same way as the prednisone, I implore you. You should look on the diet change as a lifestyle change, and think of it as your body and mind thanking you. Prednisone is NOT good for you, even if it stops a CH cycle. Switching your eating habits to include mostly unprocessed foods and a good intake of water IS good for you. Just make sure you maintain a balance of vitamins and minerals in your system- preferably naturally- and you can't not feel better.

I in no way wish to diss you, Chris. I'm delighted prednisone works for you. Personally i'd rather eat someone else's nostril hairs than touch that stuff again, but there you go. But you do seem to have a fairly healthy lifestyle anyway, so maybe that's the difference. Who knows?

cheers peter.
.

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11 Nov, 2011 - 12:47 pm

Hi Peter,
Nostril hairs!!!! YUK!!!!
I'm not so sure that it is a good lifestyle Peter.
I first used prednisolone in about 98 and used it for too long (about 3 months) at low dosage I think about 10-20mg) and had some adveerse efffects now I only use it in short sharp (but strong) bursts when the cycle has become to much to deal with.
I have only turned to it 4 times in total and before my most recent cycle the last time was 2005 so maybe that is why I don't find it as severe as others.
My results with it however make it worthwhile.
It really is my personal super drug.
I have read a lot on it in here and been amazed that so many have major issues with it, but as we all say in here it is what works for the individual.

Chris

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11 Nov, 2011 - 6:51 pm

Yes Peter keen to get off pred. as quickly as I can and I acknowledge it is not good, just 2 days left on it, it does seem to have interrupted the cycle. I understand what you are saying about diet as a lifestyle and am keen to continue to make changes for lifestyle not to combat one CH cycle!! The pred has been a steep declining dose and apart from nausea and neck pain/headache I seem to have been okay with it, no noticeable changes, no weight increase etc. Tomorrow morning will be a week without a CH , please God, and only 3 in total this cycle so very, very hopeful. Best wishes km

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13 Nov, 2011 - 2:39 pm

You're right Chris, it does seem to be the prednisolone that is working. After stepping it down, yet again this week, bang, the day after I stop it the wretched headache is back! So continuing with pred until the cycle passes.....Luckily not seeing any significant side effects. (Doc assures me that this time frame and short/sharp dose ...as you have used... is safe ...) GP is ringing my nuero Monday which I appreciate. Doc also upped my verapamil to next dose level (240 from 180) so hopefully that starts kicking in.... Am keeping up the no processed foods regardless, can only do me good. Hope you are well and headache free. Kind regards, km

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14 Nov, 2011 - 9:10 am

Hi km,
Hmmm.... Not so sure I would want to be taking the prednisolone for an Entire cycle
In the past I have sometimes used it twice in a cycle normally at a rate of 75mg a day for the first 3 days and then 50mg and then down to 25mg each for 2-3 days then I stop using.
In the case of a return bout I would either start again at 100 or 75mg and would take this for 2 days then drop 25mg every 2 days until I stopped.
Second round has always beaten the cycle for me.
This is not the case for everyone but if it is for you then like me you should consider yourself one of the lucky ones.
Most of my suffering is based around fighting the cycle until it gets so bad that I succumb to the necassary evil that is the relief that I get from the prednisolone.
Try not to stay on it for your entire cycle (I know you said your last cycle only lasted for 3 weeks) as this could mean some months, and that would almost certainly mean that you would have several of the side effects materialising.

Hope you can break this cycle really soon
Regards
Chris

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14 Nov, 2011 - 4:36 pm

Thanks for the advice Chris... hopefully the higher dose of verapamil kicks in soon, my hopes are on that.... Only a few more days on prednisolone.... and 2 days CH free again, so it is working. This is the third round, so see how we go, I do hear your warnings about it.... and hopefully this is the last of it.... I have weekly doc appoints booked so at least i feel like I am being well monitored. Trying to stay positive and so very aware that others suffer much much worse....cheers, km

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