Sunday, April 29, 2007

The Diet so Far

All the common migraine triggers (cheese, chocolate, caffeine, alcohol, citrus fruits) are "out". Also excluded are other fruits, leeks, celery, garlic, mushrooms, baked beans, tinned fish, any seafood, any processed food, any preserves, ice creams, anything with monosodium glutamate, nitrites or vinegar. So most dressings, sauces and gravies are verboten and I'm suspicious of anything in a packet with an E number on the ingredient list.

Breakfasts are now Bran Flakes mixed with Oat Crisps with milk and sugar, or, porridge with toast and butter and a cup of decaf tea. I'm restricting myself to 3 (max) decaf teas a day and apart from that, water is the only other drink. For the last couple of days the bread has been soda bread, rather than the home made wholemeal/ciabatta mixture.

Lunches at home are usually chicken slices with bread, butter and tomatoes and or salad. No dressings.

Dinners vary. Today we had roast chicken with roast carrots, parsnips, potatoes and blanched spinach. Last night it was a jacket potato with sliced chicken, lettuce, tomato, cauliflower (raw), and water cress. On Friday night I had a rare treat - fish and chips with my daughter while my husband went out to a barbecue.

For dessert? So far I've restricted myself to meringue with dulche de leche, but I also eat the occasional shortbread biscuit.

What would I add back once I'm sure this diet is migraine-free? Apples

Settling down?

But for the sleep difficulties and dizziness whenever I move my head quickly I've had a couple of good days. I've stuck to the migraine diet and avoided any medication but for half a Temazapan two nights ago when I woke at 4 am and a whole one last night when I woke at 1 am. The half failed to get me back to sleep so I got up and did the ironing at 5am. Last night the whole one worked and I slept until 0530 - the best night for ages especially considering I went to bed at 1030pm (an hour earlier than usual) due to extreme tiredness.

Looking back over time since I started this blog and went on the diet, I don't think I've had a full blown migraine since April 11th - that is if I assume the "event" of April 13th was due to the Ciprofloxacin - more a collection of headaches and nausea which may well be associated with the rapid withdrawal from amitriptyline.

Thursday, April 26, 2007

Second thoughts about amitriptyline

Is a pattern emerging? Tuesday I woke with a bad head that disappeared by lunchtime.

Yesterday I was clear in the morning but felt increasingly bad-tempered during the day getting cross about all sorts of things. We went out for lunch and I had a beefburger at Bistro Pierre's: very wholesome and free from additives but my husband reminded me that during the previous attempts to control headaches with diet, we had been suspicious of beef. By evening I was beginning to feel migranous. Today I woke with a bad head and feeling sick, but once again it did not develop into a migraine and after lunch I had a pleasant spell in the garden planting out.

Since coming off amitriptyline, I've been sleeping badly and waking early - usually around 5am, getting up around 0530. My husband looked at amitriptyline withdrawal again and was struck by the prolonged periods of tapering off which others seem to have used to avoid this and the other withdrawal symtoms of nausea, headaches and dizziness. Some people spent 6 months tapering away from 60mg down to 2.5 before dropping it completely, and most seem to take weeks over this. The overall wisdom seemed to be to reduce the dose by 5mg and stay on hte new level for 5 days before knocking off another 5 mg. There were also comments about going back up for a day or two if the withdrawal symptoms become intolerable, and then recommencing the taper.

I came off it (50mg to 25 to 12.5 and then none) in about a week, so maybe I'm paying for it.

Monday, April 23, 2007

An important day

I think the dizziness caused by the Lisinopril is gradually fading, and while I've had a dull headache all day, its been tolerable without analgesics.

It's been an important day in other ways too. I'd like to think a whole new attitude is starting following my daughter yesterday doing some other intenet searches on drug effects and other migraine causes. She says long term drug use has been shown to cause chronic daily headaches and working too hard, and getting overtired is a known migraine trigger. I always have a list of jobs I have to do before I can relax and probably drive myself too hard even when I'm doing things I enjoy like gardening. So, I want to make a determined effort to "stop before I drop" and take out more time to relax, especially to play the piano more.

Saturday, April 21, 2007

No More Lisinopril

By Friday I was pretty sure the morning headaches of the last week (not migraines), the light headedness, and the dizziness especially when moving my head quickly were lisinopril side-effects. I was also beginning to think the new diet was helping, so decided to miss Friday night's tablet. Saturday morning I felt much better - no headache and generally livelier. So we'll continue without it and hope the diet is helping as much as I think it is.

However later in the day I felt migrainous and a headache developed through the evening. I woke up with it at 3:30am and this time took some Solpadeine - which in the past have dulled the headache but tend (I think) to be addictive. I also took 5mg of Temazepam, which I use occasionally to get off to sleep and woke the next morning with a much reduced headache. This does not happen often, so something is changing. How do doctors distinguish between migraine and other headaches? Does lisinopril have withdrawal symptoms?

Wednesday, April 18, 2007

Migraine Milestones

I was 12 when I had the first migraine and for the next 25 years they were all the "classic" migraines with visual disturbance starting with a small sparkly translucent crystal which grew into a semi-circular flashing zig-zag obscuring about half the visual field for about half an hour. This shrinks back to the side of the field of view and the headache and nausea begin. Occasionally numbness in the left arm and down the left side and an inability to speak accompany the headache. These symptoms generally lasted about half a day, and were relatively easy to cope with compared with today's attacks without aura ("common" migraine) which started when I was about 35.

These "classic" attacks occurred about once a month but not with any regularity that might have been linked to the menstrual cycle. At age 22 they were affecting my work sufficiently for my boss to insist that I visited The Migraine Clinic in Russell Square, London. Phenobarbitone was prescribed for a month and this helped but I was not allowed to stay on it. When I got married and went on the pill, the frequency increased to 1 or 2 a week, but some were "aura only" with very little headache. My husband read something about taking the pill being inadvisable if these symptoms occurred so I stopped taking it, the migraine frequency dropped, and I had my first child at age 25.

Being pregnant increased migraine intensity and frequency dramatically, but they returned to normal after the birth. The same sequence occurred with my second child, and the pregnancy migraine misery was a contributory factor in deciding to get sterilised immediately after the birth (at age 28).

Classic migraine returned to the approximately 1 a month level and continued unremarkably and manageably for the next 10-15 years. During this time I was unaware of migraine triggers and while never drinking red wine, I was fond of cheese, chocolate and citrus fruits.

When my mother died (I was 45) I developed stomach "erosions" and the specialist said these were is some way related to migraines. He put me on Sanomigran and suggested giving up cheese. chocolate and citrus fruits, a regime which worked quite well for about 5 years. Things get a bit hazy here, so I'll record the milestones and fill in the details as I remember them:

  • Sanomigran stopped working and I came off it, but can't remember what came next.
  • I had a spell with no regular medicine but used Migraleve and Maxalt whenever I had an attack.
  • These (especially Maxalt) worked when I could take them right at the start of a headache, but they seemed to delay the onset rather than preventing it. I'd have a day or two clear, and then it would start again, another Maxalt would "cure" it, but it would return yet again. Being allowed only 2 Maxalts per week, I then had to let it come, and after a couple of days of misery, I'd be in the clear for another week or two.
  • The best period was, as I said earlier, the year or two I spent oh the special diet which avoided all known triggers. This caused a not unacceptable weight loss, but was eventually abandoned simply because it was hard to enjoy life with such a restricted diet.
  • The migraines returned as the diet returned to normal, but it was impossible to tell which if any of the foods added back were responsible.
  • The doctor now recommended propranolol which I used for a year or two. I suppose this lessened the frequency but not to a manageable level
  • The doctor referred me to a specialist who prescribed amitriptylene - which was great to start with, but the dosage had to be increased every 6 months to maintain the effect and with each dose increase came weight gain.
  • Coming right up to date, having gone from 10mg to 50 mg of amitriptylene over 2-3 years and found the last increase seemed to have no effect, the doctor recommended coming off it and moving to lisinopril.

Wednesday again

After waking up feeling like yesterday, the head cleared by 9am and a much better day resulted. Maybe the Lisinopril has successfully kept an attack in the background through yesterday and last night. However I've been established on the migraine diet since Sunday and the resulting detoxification might be helping too.

Yesterday I had a breakfast of Branflakes with semi-skimmed milk, homemade bread and butter, and a cup of tea. Lunch comprised a tomato sandwich and water, and I had a jacket pototo with spinach, omelette and water for dinner. Supper: half a brown bread roll and butter. This morning I had porridge, tea and water for breakfast, tomato and basil soup with water for lunch (additive free), and poached white fish with jacket pototo, butter and stir-fried (veg.oil) broccoli, onion and red pepper for dinner - with water.

Tuesday, April 17, 2007

Tuesday

I've been feeling dizzy, tired, and as if I'm about to get a migraine all day. Sickly, dull headache across the forehead with mild jabbing pains in the right temple and a mildly upset stomach.

Could this be a migraine day where the attack is being kept manageable by the lisinopril, or is it a normal day with a lisinopril side-effect headache?

Monday, April 16, 2007

An incredible coincidence?

I was lucky enough to get an appointment with the GP this morning, wanting to discuss Friday 13th and get some antibiotic ear drops. His comments were as follows:
  • My records showed I'd tolerated the Ciprofloxacin tablets on two occasions in the past so the problems were not caused by their side-effects.
  • Antibiotics do not cause elevated temperatures. There was a gastro-bug going round which would account for the flu-like symptoms I'd suffered - even though they only lasted 5-6 hours at most, and despite "flu-like symptoms" being a noted side-effect of the antibiotic.
  • The migraine symptoms were due to another migraine and were unrelated to the "severe headache" side-effect of the medication.
However he did not recommend I continued with the Ciprofloxacin. As with last year's earache, he took a swab of the fluid in the offending ear and sent it for tests so that any antibiotic could be tailored to the organism. I should check back in a week.

Sunday, April 15, 2007

Friday 13th

Migraine-free and feeling well but for a slight earache which reminded me that I was supposed to use antibiotic eardrops on the rare occasions this developed. The doctor had provided me with an extra prescription for these after the last episode during which swabs were taken and tested to identify the culprit organism and select the most effective lethal agent. Sainsbury's pharmacy made up the script at lunchtime and on returning home I opened the packet to use the drops.

Drops? This time the Ciprofloxacin was in tablet form - a course of seven 500mg tablets to be taken one a day. Had Dr Watt changed the prescription or had Sainsbury's made it up wrongly I wondered, but took the first tablet at about 3pm. By 730pm a headache started and by 830pm I felt as if I had flu with aching joints and an elevated temperature. The headache got worse, my skin started aching, and then I started shaking uncontrollably before the first of many urgent visits to the loo. Breathing was becoming difficult and my top lip was swelling. My husband decided to check the Ciprofloxacin literature for side-effects which after the usual "these are generally well tolerated" comment mentioned all of the above as a reason to seek medical advice. So, he phoned NHS Direct (930pm) who asked to speak to me and took all the details before telling us to stand by for a call-back. The call back was another nurse who took the same details and told us to stand by for a call from a doctor "within 2 hours". When this came, around midnight, the advice was to go to the nearest A&E hospital for unspecified treatment.

Driving 30 minutes to A&E, in my condition, in the early hours of a Saturday morning did not seem like a good idea, and as by now my breathing was getting easier and the shaking had slowed down, we decided to stay at home, go to bed and review the situation in the morning.

The Ciprofloxacin side effects list included "increased pressure in the head" and "very severe headache with visual disturbance" and by 2 am, visual disturbance excepted, these had arrived. My temperature at this point was just over 100, I vomited a small amount into the bowl usually kept at the bedside during migraines, but breathing was no more difficult and the shaking had stopped. We got a few hours sleep and during Saturday the symptoms gradually subsided. For the record the headache was significantly more intense than Wednesday's.

Had it not been for the shaking, the high temperature and the swollen lip, this could have been just another migraine and I began to wonder if antibiotics, maybe traces remaining in intensively farmed meats could be a trigger factor.

The relationship between diet and migraine had impressed me since July 2000 when an article in the Daily Telegraph caught my eye. At the time I was worried that migraine would ruin my daughter's wedding which was planned for August 2001, so, clutching at straws, I adopted the diet with enthusiasm. In retrospect, the year on this diet was the most migraine free period I'd had, but the least gastronomically satisfying. After the wedding I gradually returned to a normal diet and when the migraines returned I was advised to go on to amitriptyline which seemed to work well - for a while. More of this in a later posting, but I now resolved to give the diet another go.

Wednesday's Attack

Whenever I get an attack I think of Beethoven. Not that he suffered from migraine; simply that it helps to regard my problem is trivial compared with deafness to a composer. Wednesday's attack (11th April) started at about 2am although my husband later reminded me that I'd been complaining about how bright the light was all Tuesday, sensitivity to light being one of the usual precursors. I also felt particularly good that day; another sign that something's brewing. The headache woke me up, as it usually does, announcing that Wednesday would be very different. I got back to sleep but woke up at 6am with a migraine which would steadily increase in intensity until lunchtime.

This was the first migraine since coming off Amitriptyline (50mg at bedtime), which had reduced the frequency of the attacks and lessened their intensity for a couple of years, and the first since starting a course of Lisinopril (2.5 mg at bedtime) a week ago. I'd also been in the habit of taking 400mg Nurofen and 2 x 500mg Paracetamol's when the headache got bad. These sometimes numb the pain slightly at best, and if they do I sometimes repeat the dose 4 hours later. This is a funny thing really. Even though I know the tablets don't do very much they are a prop which psychologically seems important. Sometimes I take Solpadeine for the same reason and while this sometimes works better, the addictive nature of the codeine content bothers me. If I'm honest, nothing works during an attack, but taking nothing takes more courage than I usually have.

Having had two bad migraine days the week before, and worrying that regular consumption of the Nurofen/Paracetamol mixture to lessen the pain might be causing withdrawal symptoms, I bravely decided to let this one run its course without additional medication. I was immobilised for the rest of the day with one of the worst attacks of headache, nausea and diarrohea for a long time, covered in fleeces and sitting next to a hot radiator on a hot day but still feeling cold and finally going to bed with pain only slightly less intense than on getting up. Why get up? Because it's worse lying down. Why was it so bad? Was it due to the absence of Amitriptylene or the Nurofen/Paracetamol mixture or both?

Wednesday night was disturbed to say the least, but the pain was less by dawn and lessened all day. Thursday night was normal and I woke Friday feeling well. Maybe having had a bad one I could now enjoy a few extra days of normality. But I was forgetting this was Friday 13th.

Just starting

Hello, this is Molly speaking. I'm new to the world of blogging but a very experienced migraine sufferer. I've had a bad week and this is one way to vent some of the frustration and to share some experiences with other sufferers.

I'll recount last Wednesday's attack first and then the rather extraordinary story of Friday 13th - which was really all about earache - to start with. More later...