Hi all,

My name’s David, I live in Bedford in the UK and I came across this forum through an email from my daughter entitled “Dad – thought this website would be useful to you!”  How right she was… the information here is immense – and I’ve only just scratched the surface with my reading here!  My warmest thanks go out to those who run the site and all those who take the time to share their experiences, tips and tricks.

I had my first, full-on, burning, axe-in-the-head attack about 18 months ago and after only a couple of weeks or so was having three a day, every day.  Being a ‘bloke’ I left it a while before going to the doc as “It will probably blow over…”  Doctor visited and blood tests taken, I was relieved to be told that the answer to my headaches was that I had an underactive thyroid – take a few Thyroxine pills every day and everything will be rosy.  You probably know where this is going…  :)

Many, many months followed with three of these horrendous attacks every day; each lasting over an hour and the doc assuring me that it was my thyroid and I should give it more time.  Eventually I was referred to a Neurologist who I saw early January this year.  He took very little time to diagnose CH (though organised an MRI scan just to completely rule out anything else) and wrote to my own doctor instructing him to prescribe Imigran injections and high-flow oxygen, while starting me on a Verapamil regime increasing every two weeks.

So; I’m still having three attacks per day – approx. half past midnight, 4.15 am and 5 pm – though Imigran or oxygen reduce them to around 15 minutes long (there seems to be no advantage in taking both at the same time).  I’m now taking Verapamil at 960mg per day and have seen no positive effect from it yet but am assured that I will in time!  I haven’t worked properly for about a year now, I’m self-employed so have no caring boss to give me sick pay, but I often just can’t face it and don’t want my clients to know me as “The photographer who bashes his head, cries, rocks and swears a lot” so I have to be very choosy about the limited amount of work I accept.  Does that make me sound like a bit of a Diva?  Ooh, I do hope so!  ;D

A few observations / quirks:

• I’m suffering quite badly from the side effects of Verapamil, including passing-out regularly – I was recently sporting carpet burns on my face after falling down the stairs; but I can laugh about it now!  I’ve learned to sit down about 1 ½ hours after taking the pills as that’s when I get my ‘funny half hour’!  Advice and tips about dealing with the side effects would be most welcome.
  

• I went to Mexico on holiday and had 5 attacks during the 10-hour flight, each an hour long, then in Mexico had only 9 during the whole two weeks (with 7 completely pain-free days) then had 4 more on the 9-hour flight home and straight back to 3-a-day; though the regular times changed.  I’m sure there’s an explanation for this involving time-zone or ambient heat or something!
  

• Alcohol does not seem to be a trigger for me (a bummer as I don’t drink much anyway!) but one sure way of giving myself a ‘bonus’ attack is by standing around outside in the cold for a couple of hours then going into a warm room.
  

• I’ve found that I have to hyperventilate for oxygen to work for me – but it’s fantastic; don’t know how I managed without it!
  

• I tried Immigran nasal sprays but they made me violently sick – so I just had the horrible head pain while my body was trying to turn itself inside-out.  Not good…
  

• I’m shocked to find that my 15 months to diagnosis is actually a very short time and some sufferers take many years to get diagnosed!
  

• My wife, Amanda, is an absolute rock of support to me; so to all the other spouses, partners and friends out there who support a sufferer – I salute you!
  

So that’s me and my story; never really told to anybody before, so it’s been therapeutic writing it, even if nobody reads it!  I often get quite miserable and feel sorry for myself and think “Why me?" but then I remember that millions of people die through lack of clean water and we’ve got so much that we flush our toilets with it…

David.

Oh it'll get read, I guarantee you that! So glad you poked your head in, and doubly glad you already have oxygen, a first rate abortive for many of us. Hyper-ventilating seems to be the fastest way for most to abort.

Do visit:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

They have a lot of area specific information especially how to work thru your medical system there.

As to side effects of Verapamil, I don't use it so i can't help you, hopefully others will chime in.

I'd also strongly encourage you to go to the medications section of this board, and read the posting "123 pain free days and I think I know why" It's a daily vitamin/anti inflammatory regimen that's providing a lot of relief for sufferers.

Welcome home.

Joe

Hey Joe, thanks for your reply!

I'm already on OUCH - and went to one of their meetings a month ago and spoke to other sufferers for the very first time; a valuable experience!  It was there I also learned how to hyperventilate with the standard UK 15 litre/min max valve (cut the small bag off the mask and tape on a swing-bin liner bag and pre-fil with oxygen before use...  :)  )

Will go and read the '123 pain free days' post now!

David.

Very good advice from Joe. And doubly glad you found a neurologist that know something about clusters. They are few and far between. He is a keeper that can help you and also other sufferers in the UK.
Welcome to the site. You have about 14 years of reading to catch up on.

Hi David

As you can see, quite a few people have read your post.

Your daughter has done a great job directing you here. Support from family makes such a massive difference.

With the verapamil it sounds like it has drastically reduced your blood pressure, which results in the passing out. There are a few possible options which you must discuss with your Dr. First off you might be better off using the SR (Sustained Release) form of verapamil, which might help even out the drop in blood pressure. Another option is to also use lithium, which might mean that you can reduce the verapamil dose at the same time, reducing the side effects.

For the trip to Mexico, it's possible that the reduced air pressure when flying might have been a trigger for you. It's also possible that it may have been something else, like the effect of jet lag on your hypathalamus. Flying seems to affect some people and not others (I fly twice a week and I've never, yet, had a CH whilst flying).

You mentioned going from cold to warm can be a trigger. Some people find heat or cold can help alleviate a CH. Does going from warm to cold have a similar effect? Possibly something to experiment with.

Keep reading and asking questions, you'll soon learn more than most doctors!

Hello David, and welcome. All good advice encouragment posted above. It's unusual I think to find someone starting at 960mg of verapamil, rather than working your way up the scale. But I agree that adding lithium could be a good mix. I'm currently taking both verapamil and lithium and prednisone. The steroids will drop out soon so I'll get a chance to see if the verap/lithium combo is working. I would only add that you should check the posts about energy drinks. I have found chugging a double sized Monster (or Red Bull) and then taking O2 helps with the immediate abort and with the comebacks. God bless. lance

Hi all,

Thanks for your replies.  Just to clear something up - I'm on 960mg Verapamil now, but started 3 months ago on 120mg I think (with regular ECGs with steps up in the dosage) I don't want anybody to think I went straight in to the big dose as I'm fairly sure that could be potentially dangerous?!

I've finally finished reading the '123 pain free days...' thread (all 30 pages...) and have just ordered myself the suggested cocktail of vitamins and minerals to give it a go.  I have nothing to lose by trying it and, frankly, if somebody told me that standing on their head whistling God Save The Queen worked for them I'd give that a go too!  :)  In fact, I'd chew my own arm off right now if I thought it would stop the head pain.

By the way - I said I get a 'bonus' attack if I go from being really cold into a warm room; it seems to be only when I'm cold to the point of my face going numb (like watching a rugby match in January...) then going into the warm.  It has never happened the other way round: going from warm to cold.  Don't know if that's a normal thing or just one of my very own quirks!

Best wishes to you all,

David.

The work up on Verapamil speaks of a doc who knows his stuff, that's great news. I'm on the "Batch Regimen" full time now. Too many people are getting relief for it to be coincidence in my humnle opinion. The hot and cold thing, not universal but certainly common!

Joe

Make contact with your excellent support group:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Fainting is too serious an issue to not bring to your doc's attention at once. You may have to cut back from 960 Verap and/or add Litiulm.

Print the PDR file, below; one each for you and your doc. It's a nice tool to use in discussing treatment options.

---

Hey David,

The fact that you went pain free for 7 days while on vacation in Mexico is a clear indication to me that you are vitamin D3 deficient.  I suspect you spent plenty of time out in the sun clad in a bathing suit or shorts without much sun block. 

That two weeks exposure to the UV-B in direct sunlight was likely equivalent to 15,000 to 20,000 IU/day oral vitamin D3.

If I'm correct, I also suspect you will respond rapidly to the anti-inflammatory regimen at 10,000 IU/day vitamin D3...  If you don't respond in 10 days to two weeks, up the vitamin D3 dose to 15,000 IU/day.

When you do go PF, see your physician and tell him you want to stop taking the verapamil...  It's not working now and the side effect of passing out due to low BP is not good.

Take care and please keep us posted.

V/R, Batch

Welcome David  and may I  please ask you to give that daughter of yours a big hug for researching on your behalf and steering you here.   :)

Your wife, also deserves many kudos for being such a wonderful supporter.  All of us sufferers have the utmost respect and gratitude for those who live through this and stick with us doing all they can to help.  Without them our lives would be miserable. 

As soon as my husband sees I'm getting hit he puts on the coffee, brings my 02 tanks inside (making sure it's a full one) and then he leaves me alone because that's what I need.  Once we were in a restaurant and I got hit and went to the restaurants bathroom, instead of going out to the car like I should have... and someone called the police on me thinking I was drunk, or on drugs or something.  He got in their face and explained everything and slowly steered me out of there.  THAT is what we need in a supporter and they are worth their weight in gold.


Quote:

•I’m shocked to find that my 15 months to diagnosis is actually a very short time and some sufferers take many years to get diagnosed!

You are correct.  This condition of ours is so rare and the majority of Doctors have never even heard of cluster  headaches, much less know how to treat it properly, as you have already found out from your first doctor who insisted it was an under-active thyroid.

Long post just to say welcome, but I do hope you will stick around here and read all the newer treatment options  as well as simple things you can do to allieviate some of the hits, such as energy drinks with taurine in them, Melatonin for the nighttime hits,  D-3 regimen and the alternatives on the clusterbuster site.


  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

you're not alone in this anymore David. You are among people who KNOW, and care.

Linda