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Posted in Sufferer for 10 years on 16 Sep, 2013 - 7:27 pm

PS- My newest dr said "cluster headache" when I first saw her when the last one hit- up until that point, I believed it was the PH... when looking up PH (to try to explain it to my family) I found my symptoms don't exactly match that either!!

Posted in Sufferer for 10 years on 16 Sep, 2013 - 7:23 pm

Sorry it took me a couple of days, my daughter wasn't well (flu).
I am on a waiting list to see another neurologist a bit closer to home....
It does make a lot of difference having a doctor who can get things done rather than just perscribe tablets.
This site, and everyone on it has given me more understanding than I ever had before.
My original thought of all the complications that never was and now is, was simply the fact I'm getting older and the body doesn't handle them like it did before.
I was on Veprimil again, which I gave it a good go for 4- 5 months (Dr said to stop taking them), and Prednisolone when pain strikes (no more than 3 a day).
Blacklab.... That feeling of playing football- That's exactly the feeling I get! After the months of pain, I literately have to rebuild myself up again (physically).
The Imigran tablets, I was taking 6 a day (as percribed) for many months.
I did have a couple of meds that worked once, then wouldn't work the next time.... that was pretty confusing!
I will surely keep this site informed on what this is, when I know!!

Posted in Lump on the back of head? on 12 Sep, 2013 - 1:52 am

Hi everyone!
I'm new here, and looking around and learning a lot. I have noticed for many years swelling where the headache is when I have them (Ie- during the headache).
I was told about swelling in the neck while suffering a headache as well. As soon as the pain goes, so does the swelling.
I am not sure if this is related, but my daughter also mentioned to me that my eyes go black... Like I am wearing a mask (she nicknamed me a racoon- and thought it was amusing how animals look like their owners, and it just so happens I own an Alaskan Malamute!- I hope you had a bit of a laugh too!)

Posted in Sufferer for 10 years on 10 Sep, 2013 - 3:28 am

Hi again, Peter,
My dr has said that oxygen will not help me- I have not tried it, but am (hopefully) going to! I am unsure if you need a drs prescription to obtain an oxygen tank, so I hope I can purchase these privately through BOC or Air Liquide (or others).
A psychologist that I had to see for the dr, looked up various things on oxygen, and the main thing that stood out to me is the level of pain on which it works. It was written in a medical journal it may help moderate pain- pain 6; whereas my pain level is 9. (And at times 10- passing out after each headache.)
That was when things started to get complicated.... I did have full support from my dr up until that point.
I must say here, I suffered for years before any test was done at all! I persevered with the first two doctors until I couldn't take any more. I found a migraine (as that is what I thought they were) specialist and demanded a referral... I had had no scans or tests of any sort by the first two doctors. I saw one for 3 years, and the second one for 4 years.
A locum doctor ordered a CT scan (I think this was about 5 years into them), and mentioned I was describing symptoms of a brain tumour, that was the only test in 7 years I had. I lived at the doctors all the time! Medication after medication!
My newest doctor seems more thorough... She is who said "cluster headache" when I first came to her with them... That is why I looked them up.. My symptoms were more ch than cph.... On one lot of info sheets.... The more I looked into it, the info started to swap.. Ch has groups of headaches in one area, then in a different area on the next group of headaches... (That is what I get.) and cph remains in the one area every group of headaches...... The more info I read, these 2 ailments swap........ The rest is pretty much identical in symptoms, with cph being curable with blockers and other meds (my understanding is I should have been cured already!)
I wrote a pain diary for quite some time for the neurologist which is when I discovered 3 months on, 3 months off. 20 headaches in 24 hours each day- I did the calculation not long ago, and am wondering how much a human body can withstand!!
I bought an iPad months ago and discovered My Pain Diary in the apps.... This has been a great help, and is the very first time I understood the "pain level"... Now instead of wondering what that was all about.. 1 being no pain, 10 being the worst- I always said 15... I have had 2 kids, and sciatica! Aren't they the "worst pain"? Haha!

I will try the vitamin D-
Fresh food is always best!
Speaking of food... Approx 3-4 years ago I started suffering with neusea... It became so bad I was unable to eat while suffering through these headaches.
I wrote in the first post that the headaches remain the same, but the body doesn't seem to be coping any more...
I also started to suffer severe ear infections (started about 5 years ago).... Is this a complication of these headaches? I am constantly getting tests for diabetes.... One dr said to me the only people who get these types of infections are diabetics or people who are worn out..... I don't have diabetes... Tested many times since they started.

That brings me to another question.... What damage are they doing?
I have so many questions.... Please bare with me... This has been the best help I have ever had...
I have also realised I have lost so much of my memory.....
My daughter has said a few things that I do while in a headache that I am unaware of.. Is this normal too?? (And it's insane things like I will walk outside in the daylight.... Shaking on the right hand side of my body only... Smacking into walls etc while I go to the shower (I say to help ease the pain, but it was so my young daughters didn't witness their mum in pain).)

I have also realised that the length of time the headaches are present, that same length is needed to recover....
All strength is gone... Get puffed out walking from kitchen to lounge... (It took me 2 hours to walk a 1/2 hour track during recovery)...

Are these side effects of these headaches or just my body not handling them so well any more?

Sorry for the long, boring post!!! I have had so many questions about these and have never known anyone to go through this before!

Posted in Sufferer for 10 years on 08 Sep, 2013 - 1:03 pm

Thanks Peter,
I understand how PH and CH are different, I hadn't heard of either of them.. I read some fact sheets on the national headache foundation site about the PH, and they do not fit with what I go through!
My last dr appointment she said cluster headache.. So I looked it up (back on the NHF site), and it is closer to what I experience..
I never thought that I may possibly have more than one condition.... Hope not! Either one is a nightmare!!
I have had these for many years and already worked out the best thing for me to cope! It's now trying to get the doctor to understand it!!

My frustration is being in the constant position of having to attend so many appointments, for so many years and (feeling like) getting nowhere!!
I stayed positive for so many years, but after the last one.... Every week I had to see dr, every week I also had to see a psychologist, lost my job and had to travel to get back onto centrelink, who placed me back on the dole!! That then put me in the position that not only did I have to travel for their appointments, I also had to try to seek employment while suffering through these!! I had to see a social worker (again)... I also have to see an employment agency weekly too!
Another CT scan, as soon as I lie down one can be triggered!!
It doesn't sound too bad, but, I was suffering with these headaches while doing all of it!!

The dr clinic is 40km away... I was seeing the one in town for 7 years, on one of her holidays, I saw a locum and explained these headaches who referred me for a CT scan, after mentioning the I am describing a brain tumour! I had never had any tests done by the local dr's. In the end I looked up a migraine specialist in Melbourne and demanded she write a referral!
Melbourne is 250km or so away.....
Centrelink is 120km away... They will only allow you 7 days to attend an appointment if you need to cancel.
The CT scan (both first and second) are 120km away

No one wants to make an appointment while I am fine, but as soon as I get the headaches, I seem to have to travel all over Victoria!!
I am on a waiting list to see another neurologist and I am hoping to be properly diagnosed, unfortunately, one neurologist has already written "probable cph", so that will have more weight than anything I say!

I just sound like I'm whinging!!!
I have searched for something like this so I can see others also go through this and to keep up the fight to put my life in a better position.. I'm trying not to give up! I try to see the light at the end of the tunnel... And hoping its not a freight train!

Posted in Medicare eHealth records on 08 Sep, 2013 - 1:42 am

This record only goes back to 2011 at the moment. I will be so happy, glad and relieved when it goes back to the beginning! 3 years of these headaches have vanished from my first referral to the neurologist.... The old dr refuses to hand the records to the new dr (due to so many mistakes made).

The chemist thing made me giggle... I have been lectured by 2 different chemists about the medication I was prescribed! The first one I snapped and told him to ring the dr and tell them all about it... The second one I went from happy me into very serious.... While I explained what it is I go through....

Posted in My alternative treatment on 08 Sep, 2013 - 1:31 am

I had been advised about homeopathy recently. The description given to me was that studies were conducted by (sadists) people who would feed people things like mercury, poisonous plants etc and study the side effects to them. These elements were then diluted to minute measures, which then act as an immunisation.
It was described to me that they can trigger off an attack, then fight that attack to abolish any more.... That sounds scary.. To trigger an attack, but lets face it.... When you've done everything else, you're prepared to sit on your head and sing Knocking on Heavens Door if there's a slight chance it will help.
Tan, I understand where you are coming from.... I have ran out of all the miracle medicines to be prescribed that are supposed to prevent these things, and ease the pain... None have ever worked.
Keep doing what works for you!

Posted in Supporters tips on 08 Sep, 2013 - 1:03 am

I'm new here.... Support is one of the main things we need during these times, maybe not to begin with, but at some stage we will.
After many many years of trying to deal with these on my own, I find I am no longer in the position to focus on my breathing to ease the pain. I have had to ask for help in pain management.... "Please talk to me to put my focus on you rather than the pain". I have had to wake my daughter on the second headache during the night to get a drink for me...
It is a big thing to try to deal with, and I find that I think about what everybody else will witness and they should not have to deal with it.
2 weeks into my last headaches, my daughter said to me "I am stuffed, mum. I can't imagine how you feel". My heart sank... I had 10 weeks of these left to go through, then the task of regaining my strength back again. After the headaches, she said to me "There is nothing worse than seeing your mother cry". The realisation of what supporters go through seems as bad and confusing as the headaches themselves.
Without her support, from the age of 7, cooking, cleaning, getting her little sister ready for kinder and school, darkening the house for me, making appointments, paying bills, doing the shopping..... I don't think I would have coped. (She is now 17.)
On behalf of all us suffers, I would like to thank all of you supporters... Without you we can not survive.
We may suffer with these headaches, but we also suffer with feeling like a burden during these times too, we suffer knowing that you suffer through them too.
We are grateful with all the help and support you give us. We are also frustrated that we are incapable of doing the most simplest of things and need to rely on you.
Please do keep up the good work, you show us the love and respect we need to keep fighting this fight!

We know the pain of suffering, but don't understand the pain of watching someone suffer.
You know the pain of watching someone suffer, but not understanding the pain we suffer....

I can't think of what might be worse?

Posted in Financial coping strategies during CH cycles on 07 Sep, 2013 - 11:03 pm

I hear you all loud and clear!!
I have just lost the 3rd job in 5 years... 2 other jobs I wasn't even able to attend.. A job a year!!
For months I explained these headaches to my employer, who constantly reassured me my job will remain for my return...
It wasn't! After 2 months I lost my promotional position, then my entire employment. I was the most qualified in my position, had spent my 2 years pain free there, cert 3 in my area... I did all I could to prove my worthiness for when this happened.
I was fired on a medical cert, and placed back on to the dole!
As for how I handled it financially... I am a single mother- my eldest daughter, now 17, left her schooling to look after me (as the last one was so severe- and she has been around during the last 10 years while I go through this)... My youngest daughter lives with her father, and it is the best place for her to be.
I found I was constantly selling everything I could, I was getting food from St Vincents delivered to us (as I need to be in complete darkness and silence during the headache months).
To this day I get threats of disconnection and restrictions on all utilities....
This is hard work, and I am unsure if I should try to get another job to lose...... My Dr (I have asked 2 different Dr's to fill out the Disability Pension form) refuses to fill out the forms, so I seem to be in a catch 22!!
I am now living on "Borrowed time"- my normal 3 months pain free is up- I am scared to death of getting another headache!!
No- I'm not scared of getting another headache, I am scared of having to suffer to travel back to the Dr's again (40km trip- waiting in bright white lights for an hour or so,and travelling home).
I thank God my daughter has her L's now.... That has taken a bit of strain off!! However, due to finances, I can't afford the rego due in 2 weeks!!!
I'm also scared of getting another job, only to rely on it to live, then lose it again, and go through the torment of travelling etc to get back onto Centrelink!!

Posted in What is after oxygen? on 07 Sep, 2013 - 10:25 pm

I have dwelled into this oxygen to relieve pain of these headaches....
However, there are a couple of things that stand out to me.. I have worked with a psychologist and GP with this...

Going by what we can find, oxygen will ease pain after an hour or so of use... My headaches last 45mins, so they will leave before oxygen may take effect....

The oxygen might ease the pain for only 24 hours... I suffer for 3 months.... 90 days (give or take a day or two)... Has anyone had significant relief for longer than 24 hours??

The main thing that stands out is it will only work on moderate pain... (Now that I have an understanding of the pain meter)-- pain number 6... What are the,chances of the relieving pain 9?

My GP does not believe that oxygen will help me in any way at all. My last medication for pain relief was steroids.... As if I wasn't depressed enough, I gained a lot of weight!!!!

Posted in Sufferer for 10 years on 07 Sep, 2013 - 9:48 pm

My name is Jo. I have suffered with these hideous headaches for the past 10 years. The medical 'help' is a joke... I spend more time while suffering having to get check ups.. Travelling around while in this pain. Over the past 3 years I have refused to go to the drs so I do not have to suffer any more than I need to.
The side effects to these have become worse as the years go on, however the headaches themselves remain a pain number 9 on the pain scale (which I have only just learnt!!)
Light has always been an issue. When they first started, I could go outside in between headaches, but after the last one (February until April) if I ventured outside, it seemed to drain me. It took me 3 days to recover.
On average, my headaches are 3 months on, 3 months off.... I never was able to fully recover from one before the next lot hit.
I get up to 20 in 24 hours. At times, I have passed out coming out of these headaches (meaning pain number 10).
I have never actually been diagnosed with anything, which made it harder on me to change doctors, which I have just done.
A neurologist wrote I have "PROBABLE chronic Paramoxyl Hemicrania".
I spent 7 years being given every drug to no avail, verapamil does nothing, I am petrified of needles going into my arm, so spent many years getting injections in the leg of the many mornings I was desperate to prevent the next one so I could sleep. (For many years I was being treated for migraines, 6 Imigran tablets a day that did nothing)

I am a single mother, I have lost 3 jobs, I am constantly being put on the unemployment to look for another job just to lose it.
I was accepted 2 other job positions that I could not manage to make it to!

I have become angry over this last one.... I had not suffered with one of these headaches for nearly 2 years, I thought they were over....
And now, back to the beginning... Drugs and more drugs, scans, tests, occupational therapist, psychologist, social worker, neurologist, and having to apply to centrelink because I lost another job...... So back on the dole....

I have had enough, not exactly of the headaches, I have learnt to accept them, I have had enough of going through the same things all the time, and to be treated the same way all the time.

And if I hear one more person say to me to "Just" do anything....... I think I'll scream!