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Cluster Headache Help and Support >> Cluster Headache Specific >> Letter to my Doctor (warts and all) as at 16 Nov 2

Message started by Graemel on Nov 20th, 2018 at 5:38am

Title: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by Graemel on Nov 20th, 2018 at 5:38am
The first occurrence of the Cluster Headaches (CH) happened when I was 35 years old and living in South Africa. The CH arrived out of nowhere. I experienced crippling headaches at random times on an almost daily basis. These headaches would last anywhere between 30 minutes to 2 hours and were incapacitating, I would have to lie down in a dark room and simply endure the most terrible pain. I also had a marked increase in sensitivity to light. I visited my GP and was prescribed painkillers such as the equivalent of paracetamol and tramadol. These painkillers had no affect and he referred me to a neurologist. A scan was done, the neurologist diagnosed CH. I was prescribed cafergot to be taken at the onset of the CH. The cafergot worked very well and after a relatively short time the CH stopped altogether. I had 10 years CH free with no medication needed. Back living in New Zealand the CH returned when I was about 45. I had forgotten the name of the tablet which gave me 10 years relief. Dr Liz Fitzmaurice phoned a specialist and lo and behold he suggested cafergot. The CH stopped again for some years. They then returned. At this stage there were concerns raised about taking too many cafergot so initially Liz put me on blood pressure tablets. These were a disaster re the side effects of exhaustion, impotence etc. The CH continued and Sharon and I resorted to google and on a CH website verapamil was suggested. We consulted with a locum Chris Pratt and he was happy to prescribe verapamil with cafergot as a backup. The verapamil appeared to have few side effects and kept me almost CH free for 6 or more years. Around 2 years ago, for whatever reason, the verapamil stopped working and the CH returned. What then followed was a nightmare. I resorted to increasing the verapamil as well as exceeding the maximum dose of cafergot. Side effects were severe and included exhaustion, apathy and depression, all the while the CH continued with multiple episodes weekly. I also tried sumatriptan but it had little effect.
Around five months ago the situation became untenable and I realised I would have to save myself. I began experimenting with verapamil and cafergot medication. I reduced the verapamil to 2 tablets per day. The CH continued and I continued using the cafergot at the onset of a CH.
The turning point was when I began using cafergot as a preventative medication. I began taking 2 cafergot per day at 12-hour intervals (14 per week). The CH abated. In the 2nd week I reduced the dose to half a tablet at 12-hour intervals (7 per week). The CH returned but not nearly as severe and often I could manage the CH with an ice pack. The duration was down to between 15 and 30 minutes. With the reduction in medication the serious side affects lessened markedly. From a point where I did not have the energy to pump up the tyres on my bicycle I not only inflated the tyres but I cycled 40 kms in the following week. I did get to a period where I was taking half a cafergot every 24 hours (3.5 a week). I can still do this from time to time but currently I am taking the equivalent of seven cafergot per week plus two verapamil per day. In the last ten days I have cut the verapamil to one per day. My current management of the CH is to continue trying to reduce the amount of cafergot in order to avoid side effects. Some time back I discontinued zyban. I do not know if this has any relevance.
After a consult on the 8th May 2018 Nicola Rowbottom (DHB Pharmacist) compiled detailed and well written notes which support most of the above. The main exception being switching cafergot from a reactive to a preventative medication.
Side effects during the period include:
•      Exhaustion – tiredness continues albeit at a reduced level even with the reduction in medication.
•      Constipation – has improved greatly with the reduction in medication.
•      Sensitivity to light – continues the same during CH episodes. I have adjusted the contrast on the TV and computer monitor which helps to a certain degree. Cataract surgery to both eyes may also be a factor.
•      Nausea – continues after a CH episode. Odansetron helps.
•      Temperature regulation – has improved markedly with medication reduction but is still a factor. I often feel warmer than I should do.
•      Cold feet and extremities – this is a long-term condition and certainly aggravated by the cafergot and verapamil use.
•      Weight gain – probably a side effect of verapamil.
•      Paresthesia stomach – these episodes occur 2 to 3 times a month at night time only. A heat pack on the stomach helps. Cause unknown.
•      Scalp sensitivity – worse during CH episode but can occur at anytime to the point of being painful.
•      Chilblains during winter. I last had these as a child. Cafergot is the cause.
•      Viagra has to be taken with great care. It is indeed a dance with the devil.
My rosacea is a lot worse and has to be managed daily. I currently take one doxycycline and rozex gel. It certainly is aggravated by CH episodes and accompanying stress.
My right leg has recovered fairly well from the February fall however I still have difficulty riding a motorcycle due to the way the hip and knee joints are bent. I suspect there has been some loosening of the hip joint from the fall but I am relatively pain free and can walk okay. I can also cycle and must admit that I have not been cycling enough. I intend to greatly increase cycling through the summer. A normal 10km ride leaves me with a sense of wellbeing and physically improved.
During the past few years I have at various times been offered, and accepted, different medications for issues unrelated to CH. One example was statins for cholesterol. This medication left me feeling quite unwell and it is my firm belief that it aggravated existing serious side effects of CH medicine. I discontinued it after a short time. I was also offered, and accepted, aspirin to prevent possible strokes in the future. After taking this medication for some time I realised it was aggravating existing, serious side effects of CH medicine. The interesting aspect about the aspirin is that it affected my problems with temperature regulation. As a penny farthing blood thinner it weakened the blood getting to my skin, this blood was already constricted by cafergot medication. In addition during a time of high stress I asked for and was given prozac. This medication resulted in total exhaustion to the point where I could hardly get out of bed. Restful sleep still eluded me. Some research I have undertaken suggests that prozac should not be prescribed with verapamil.
With regard to my health care in the future I believe things have to change. Age related medicines and screening must be checked rigorously for negative interactions with cafergot and verapamil. If there is even a 5% issue then it must be ruled out. I would like less box ticking for the Ministry of Health and to be treated as an individual client who suffers from debilitating CH. For the near future the focus must be on CH. Currently I am far from cured but I have got to a point where I am more able to manage my CH. It is possible that once my leg is fully recovered I may have to apply for a motorcycle helmet exemption. I am currently trialling a very light weight motorcycle helmet and time will tell if it is successful. At the moment this is moot as, due to my leg, I am unable to ride comfortably.
On another matter I do not wish to be offered cancer screenings. The two main reasons are a high number of false positives plus resulting unnecessary surgeries. Simply put current technology is not good enough.
With regard to tobacco I find the continual questioning offensive. In my view the current punitive tobacco tax is a vicious evil abuse. It has caused huge social problems and a massive spike in crime, notably dairies and service station robberies. The turning point for me was when a Hamilton dairy owner lost his eye during an aggravated tobacco robbery. Further to this my youngest son currently works at a service station and is often alone at night. I cannot change government policy but I do want to remove myself from this information gathering. I am happy to disclose my tobacco status when having an operation. It should be noted that whenever I am asked this question I feel very stressed up to two months afterwards. I do not wish to be difficult on this matter but I do not need the extra stress.
The turning point for my CH management ironically was after a consult with Mike Tombleson after my serious bout with sepsis. During the consult a prostrate check was offered which I declined for reasons already mentioned. Some pressure was applied and I further declined. I was left with the feeling that my reasons for declining the offer were ignored and he noted on my file that I was reluctant when in fact I had declined his offer. This left me upset for some time. This was the point I realised I had to help myself and began an all-out effort.  I have a poor knowledge of how the Practice is reimbursed through bulk funding and targeted incentive payments but would like my wishes to be respected. These age-related medicines and screenings may be suitable for the majority of clients but in my case it distracts from my CH and in some cases can make me feel worse.
With regard to all of the above information I accept full responsibility for my healthcare preferences/ decisions and any consequences that may arise.
My current daily CH medication regime is one verapamil tablet and 2 x ˝ cafergot (7 tablets per week). In addition I take one losec tablet, one doxycycline plus one zopiclone for sleep. This is a massive reduction from before.
In conclusion I would say that there are two main aspects to my CH management. The first is to take enough medication to avoid/prevent CH occurring. The second is to continually strive to reduce the medication necessary for such prevention. This will be a balancing act and from time to time I will experience CH. In the past I focussed solely on the crippling pain of CH while losing sight of the side effects of medication. As a result for the last few years I have been operating at about 70% of my potential. I see other men of my age who are far more active. This has had consequences for my business, family and also work relationships. I cannot get the time back but hopefully using my current medication regime I will see a great improvement in my life. If a new miracle cure is available then I am all ears. Snake oil remedies will not be considered. I  also accept there is a large lack of knowledge about CH.

I welcome any comments/constructive criticism on the above from this site. As you can see I am desperate.

Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by jon019 on Nov 20th, 2018 at 4:57pm
Hi Graemel,


and/or: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE ...alternative meds helping scores of folks...



Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by Graemel on Nov 20th, 2018 at 6:08pm
I have tried oxygen and it just does not work for me.

Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by jon019 on Nov 20th, 2018 at 8:13pm

Graemel wrote on Nov 20th, 2018 at 6:08pm:
I have tried oxygen and it just does not work for me.

That's really unfortunate....O2 has saved many a clusterhead's sanity, and probably life (ME included). Would you share with us flow rate (15-25 LPM minimum recommended).....mask used (MUST be a non rebreather or direct mouth to mouthpiece, there's a great mask available right here) ....technique (when started, how long, how long after hit subsides, breath and hold,  hyperventilation, etc?)



Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by Mike NZ on Nov 20th, 2018 at 10:55pm
A really good history which will help any medical professional reading it.

With a lot of the medication you say things like "one tablet", it would help if you indicate the dose, e.g. "120mg". It could be that for some of the medications you've not tried a high enough dose.

Cafergot seems to be your safety blanket, but you seem to be over using it (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE - this is the NZ info that doctors will refer to). Note that it says not to take more than 10 a week, but you're taking two a day, so 14 (but check against the dose you are taking and the dose in the document, a simple number of tablets comparison doesn't work). It also says not to use it as a preventive.

Whilst it seems to be helping, there are serious side effects, especially from long term use and using it at higher than the maximum recommended doses.

I'd read through this info and see if there are any other things in the document which could be relevant, like do you use grapefruit juice?

You say you're taking one doxycycline a day, which is an antibiotic. Are you using any probiotics at all to stop all the beneficial gut bacteria being wiped out? This could be impacting your CH and other health issues.

For the rozex - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE. Read up and check the information, especially around the duration of treatment.

The average period of treatment is three to four months. The recommended duration of treatment should not be exceeded.

The accident with the right leg could be resulting in a lot on inflammation.

It is also spring here in NZ (or trying to be), so there is the potential for seasonal allergies resulting in inflammation.

For any possible prozac / verapamil interaction you are best talking to a pharmacist. They often know more about drug interactions than many doctors. Plus you're taking multiple different medications, so get them to check the full combination.

I'm surprised by the "5% issue" ruling medications out. With any medication it is a case of comparing the benefits against the side effects at the dosage(s) used. For example a 5% risk of death would be something to avoid, but a 5% risk of losing / gaining a small amount of weight would be something to not worry about for most people.

Around smoking, there seems to be more people who smoke / have smoked with CH than those who haven't but the reason(s) why aren't really known. Plus people who have never smoked do get CH too. Purely looking at CH, the only advice I've seen from CH experts are that it can limit what medications can be used. It is your choice if you smoke or not.

The doctors you mentioned seem to be general practitioners who are less than ideal for dealing with CH, never mind CH with other health issues with multiple medications in use.

Have you worked with a good neurologist? It might be that you need to travel outside of the central North Island to see someone with a good range of knowledge and experience around CH.

As Jon mentioned, I'd look to try all alternatives if needed to get your CH under control.

D3 is also a great option which works wonders for many.

With oxygen, what flow rate did you use, what type of mask and for how long? Did you start it soon after the CH started or once it had developed?

Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by Graemel on Nov 21st, 2018 at 4:52am
Hey guys thanks for the input. This letter has been sent to my doctor. I am having a consult to discuss on Friday this week. I am 64 years old. I am now back on 2 verapamil per day. One tablet worked for a few days and then  i started feeling weird. Hard to describe but my head felt strange. So verapamil is 120mg per tablet x 2 per day. Cafergot does not say how many mg on bottle.  I am taking one per day. As in 2 x half tablets. Doxycycline is 100mg. One per day to help control rosacea. I tried oxygen once when I had a CH at surgery during consult. I have no idea of the dose volume etc. My doctor is reluctant to try it plus for me I get CH in variety of places. That is why I carry medication. I would be interested in vitamin D3 as long as it does not conflict with current medications. The 5% I refer to is just a thumbsuck figure and intended to help doctor focus more and stop box ticking for ministry of health. I realise common sense has to apply. Upcoming consult will be interesting and I am sure docs do not like their empire and income streams being questioned. All their money comes from the taxpayer. A lot of what is going on is a big scam to extract cash from govt and it is sad that people get hurt along the way. I admire medical professions cleverness to get govt to agree but am disgusted with results. For me I just want my CH helped without other agendae. Man cannot serve two masters.

Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by jon019 on Nov 21st, 2018 at 11:11pm
Hey Graeml,

...once is not enough for OXYGEN (ya don't get to give up on it so quickly unless you've tried it correctly)...... and I would be pissed at my doc if all they did for me was throw more meds at it....and NOT INSIST on OXYGEN . Its the most medically well known (it's in the lit!), accepted, effective, primary, relatively cheap, side effect free, abortive there is....

...add some D3, energy drinks, OR  busting and you may be able to dump all those meds...



PS To address the need for spontaneous abort well at hand I: kept a passel of E tanks and one M tank at home, one E in the car (well tethered), and one E in my work office (wheeled cart). Worked out well.................

Title: Re: Letter to my Doctor (warts and all) as at 16 Nov 2
Post by AussieBrian on Nov 22nd, 2018 at 4:46am
Graeme,  I agree with you completely that we are our own best advocate in this nightmare and must take control of our own treatment and therapy.  Central to this is knowing all the possible options along with their respective good points and risks.

General consensus here at is that we start with a preventative process to lock out the beast as best we can but have a boat-load of ammo for when the monster sneaks through the boundary.

With a bit of careful research it’s not difficult to look at everything available and form your own personal plan of attack. 

A possible preventive regime when a new cycle looks like starting might be a Pred-taper while the verapamil kicks in plus the vitamin D3 regime going in hard from the start.  While this is all happening there’s time to get the old O2 organised,  all the info is right here for excellent results,  and I believe your NZ health service is a bit easy to deal with on this subject.

Then there’s all the interesting alternatives that work wonders for different people at different times  -  Red Bull,  Immigran,  melatonin,  ice packs,  exercise,  hot/cold showers,  sex, booze and Rock & Roll along with checking out our friends at

The list goes on but I reckon if you don’t look at every alternative then there’s no point looking at any of them and this is what allows us to make our own informed decisions about how we’ll fight this war and win it.

Happily is the suppository of all knowledge on all matters CH and we’re only too happy to back you as you form a master-plan of attack.

We care.

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