Prescribed Tramadol Hydroxide (50mg) in place of Co-Codamol. Not advised of changes to Warfarin dose pending INR result.

Result not advised until I had rung twice for results. GP advised (on my advice of changes in other related drugs) to increase warfarin to 4.5 mg daily, repeat in 1 week.

Result not advised until I had rung twice for results. Result finally advised 13/01/03

Tramadol Hydroxide (50mg) inreased to a maximum of 8 per 24 hours, no effects on INR expected by GP and no significant side effects have occured. Poor/ inconclusive result - repeat in one week, result not entered on medical record at GP's. I feel it is below 4.0 as sharp head pains are recurring.

Tramadol Hydroxide (50mg) increased use to two in the morning and one at night, this is certainly helping hand and foot pain. Todays blood test has left a swelling in the vein (possible clot) adding to my fears that the INR is low. Surgery did not advise of INR result, I rang on Thursday pm and was told, by non-medical staff member, to increase current dose to 4mg/5mg on alternate days. Only after explaining this was the current level and self estimation of an increased dose, was the GP asked to ring me personally. Dose of 5mg due tonight.

GP phoned, change dose to 5mg per day repeat test in one week, mentioned that surgery records did not show current dose nor result from 16/01/03. GP seemed unconcerned at lack of information on their system.

 Rang for result am 31/01/03, Doctor not seen results yet. Ring back later, advised if result higher 4 or lower than 2 it will be flagged for a phone call. The result of 3.2 does not fall in the flag area. I would therefore not normally be brought to the doctors attention. How many times, and to how many people, do I have to advise that my INR must be 4 or above. Head pains are now frequent, small clots in arms and legs and large clot at point where blood sample was taken. Phoned pm 31/01/03 advised no change in dose.

 Friday Night ...... Pains in head becoming unbearable, two clots in left forearm and three separate pains in legs. Begining to panic, have taken an extra 1 mg of Warfarin in the hope of 'boosting' INR to 4.

 Saturday .... 11.30 am Severe head pain heralds start of a TIA. I now know what to expect, no panic, relax and control actions and reactions and sit it out.

Options:

Ring doctor. Chances are the duty doctor will have no knowledge of disorder let alone the symptoms. Decided this option would be futile.

Call Ambulance. Using last three TIA's as a guide decided to not follow this option as the time to A&E is about the same as noticable effects, can't face long wait and disbelieving doctors.

17.30 increased dose of Warfarin to 6 mg (1 mg extra).

Although advised doctor of last weeks symptoms and TIA there was no further INR test. Advised to wait another week and repeat test. Head pains contuing and becoming more frequent,  joint pain has increased as have the number of small clots in the legs. Some are now visible in the veins close to the surface.

Level still too low GP rang 14:00 on 12/02/03 and advised to increase to 5.5 mg  per day, repeat test in one week. This slow increase will take approximately 72 to 96 hours to start to increase the INR. At least another 4 days of head pains, what I would give to have emergency Heparin as a standby.

Minimal increase in INR, results not rung through as within accepted level for most patients. Only flagged for change if outside the levels of 2.0 to 4.0, As my target level is between 4.0 and 5.0 it would appear that I am never going to be advised of my INR result unless I specifically ring to remind them.

Although the GP advised that my level is 4.0 plus and that I should be tested every week until it has remained steady around the control level, the results clerk advised that her notes show 'No change in dose and repeat in TWO weeks' Call from GP requested.

Pains in head have become regular at about 1 hour intervals, now have pains in both calf muscles, back of both knees, both thighs and in kidney area and chest walls. This is beginning to get past the levels of 'lack of understanding' and into the realm of 'serious negligence'.

Do I have to die before this is taken seriously, at least that may help future patients.

GP rang 20/02/03 advised increase to 6.0 mg daily and repeat in 1 week.

Head pains eased by Monday and gone completely by Tuesday morning. Test on Tuesday shows INR to be exactly on target.

Head pains gone, feel much more 'at ease' with my symptoms. Result was fractionally high, but GP's surgery rang to advise on reducing dose. Explained to GP that the fluctuation may be due to lower consumption of green vegetables and an increase in the onion and garlic intake this week. GP agreed to remain on 6 mg daily and to retest in 1 week. Nobody rings when it is dangerously low, but panic calls occur when it is 0.8 over the target. Having looked at my diet for the next 7 day's I decided on 5.5 mg per day.

Wow, we are getting there seems to be holding steady. Next week will show if I have got it right.

Steady at last, only a few head pains, all the usual joint pains,swelling and general symptoms. I can live with that, so long as the head pains stay away.

Dose to remain the same repeat in 2 weeks.

Onions eaten the day before created a high INR. The surgery panicked and told me to reduce my dose to 5.5 mg.

TIA - admitted to Bath RUH where they administered Heparin (short term fix) and increased the dose of warfarin, giving me 2 mg extra immediately.

Result still had residues of the Heparin from previous injection.

Although advised to reduce dose, I feel unsure of the reasoning behind that advice. I am still finding small lumps in the veins on my forearms even at a level of 4.9. If the level lowers during the day will I end up back in A&E. What I would give for a home test kit, a daily test and full control instead of a once a week test that only shows a 'snapshot' of the levels at that exact moment.

I felt the result would show a low INR as I had leg pains in the thighs and calfs,  The blood was tested on 06/05/03, and I requested a result on 07/05/03 as my health was deteriorating. Head pains started ocurring on 07/05/03 and became quite serious by midnight. The concern and worry of another TIA is becoming unbearable, and I now know the INR is low! Rang again for the result on 08/05/03, and told it is 3.4. As I am now on record as needing 4.0 plus it is adding to my concern that I was not told immediately and that I have missed 2 opportunities to increase my dose already. this further delay  is creating extreme concern that is unnecessary. At 11:17 a.m. I still have not been advised to increase my dose. Perhaps now is the correct time to ask for heparin to keep in reserve for just such an occasion.

Hooray! No change repeat in 2 weeks..... At last!

Now taking 7.0 mg Warfarin to keep a high INR only control is on the day before the test when I eat 2 green apples, one in the afternoon and one in the evening (close to 10:00 p.m.). This drops the INR to 4.2 by 10:00 a.m. on the day of the test, let's see what happens on the next test.

Absolutely no reason for increase. Excercise and diet have not changes, so cannot see a visible reason. Not been feeling 'well' and have been tired.

Dropped from 5.9 (unusual rise) to 4.2, the advice is to repeat in 2 weeks. Result given 29/05/03.

I am concerned that a drop of 1.7 after only 4 days change in medication may lead to a dramatic drop, but have no evidence for concern.

Extreme head pains have started again, right thigh is twitching and painful, left forearm has 3 distinct 'lumps' within the muscle and I feel very tired and lethargic.

Head pains are about 8/9 each day, left foot is swollen left thigh is painful. Right thigh is still twitching and painful, increased pain to right wrist and hand and there is added concern with chest pains and a feeling of stress at the slightest variation from my normal routine.GP suggests increase dose to 6.5mg and repeat in 2 weeks.

Head pains reduced yesterday, they seem to have stopped today and the leg tremors (twitches) have ceased. Most joint pains remain the same.

GP advised to miss one days dose then drop to 6mg per day. I find this a cause for concern as previous problems have occurred while on 6mg daily. Repeat in one week.

Joint pains remain constant, new pain in both legs in muscle on, and above, the knees. This pain is identical in position and intensity on both legs, and feels like muscle strains (close to those I used to get after long hill climbs when cycling) No increase, or change, in current exercise routine to explain these pains.

Feel really good, knee pains have gone, and all other arthritic type pains remain the same. The head pains have completely gone, it is a shame the INR is so high as the GP's surgery are now panicking and telling me to miss 2 days doses and re-commence on 1mg (no way that sounds like a death sentence). From 09/07/03 I have decided to reduce to 5mg daily and take on-board an increased amount of vitamin K. This should bring the INR down to 4+ by Friday, when I have a new test, after which I will return to 6mg for the duration of my holiday.

Plenty of Vitamin K, a whole floret of Broccoli with the evening meal and plenty of green apples during the day of 09/07/03, and the INR is back to 4.0. Going back to 6 mg per day from tonight and to hell with medical opinion. Had I missed the 2 doses I was told to miss I would now be well below my therapeutic level and in severe danger.

Head pains, joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Head pains, joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Head pains, joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Head pains, joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Dose rate changed to 6-6-7-6-6-7mg. Joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Revert to dose of  6-6-7-6-7mg. Joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Drop to 6 mg daily. Joint pains, muscle pains, fatigue, nasal ulcers, mouth ulcers and heat sensitivity.

Not sure of reason for rise, remain on 6 mg and retest on 11/08/03. Joint pains, muscle pains, fatigue and heat sensitivity. Nasal ulcers and mouth ulcers cleared.

Stay on 6.0mg daily. Still have normal joint pains, muscle pains, fatigue and heat sensitivity.

6.0mg has previously been OK, so remain on this. Still have normal joint pains, muscle pains, fatigue and heat sensitivity.

6.0mg has previously been OK, so remain on this. Still have normal joint pains, muscle pains, fatigue and heat sensitivity. New pains in right flank.

Little bit too high, reduce to 3.0mg for next two days then resume at 5.0mg. Still have normal joint pains, muscle pains, fatigue and heat sensitivity. New pains in right flank have increased.

Back to therapeutic level Still have normal joint pains, muscle pains, fatigue and heat sensitivity. there seems to be an increase in the muscle pains and there is new pain in the knees. Pain in right flank has reduced.

This is below the level where I used to get severe head pains, but this time they did not appear. This may be an effect of the Aspirin, as on previous occasions where the INR was below 4.0 I was  not on Aspirin. Increase to 6.0mg daily.

Most  normal joint pains, muscle pains, and fatigue increased, and the pain in the right flank has disappeared.

Rising, so remain on 6.0mg daily.

Foot pains are increasing,  I have found the use of a walking stick to relieve some of the load on the foot helps and is of great help on uneven ground. No change in other symptoms.

Still too low, but was higher last week, small increase to 6.5mg daily to see if it fluctuates in the next 7 days.

No change in pain symptoms, but fatigue seems to be cutting in earlier.

Headache started today, later in the day one of the severe head pains came, it is a while since I had one of those and I forgot how painful they are. Stick with 6.5mg until Wednesdays test, as it is too soon for the increased dose to have a full effect.

All symptoms remain unchanged, but I have now purchased a walking stick as this does help with relieving the foot pain in the left foot.

I seem more forgetful and disorientated today, headache is still with me and a few minor head pains have occurred.

Remain on 6.5mg until wednesdays test, as I am trying to be consistent, and seeing if the aspirin is taking the edge off the warning signs.

Still dropping, with no  apparent reason other than the hot spell is over and we have had a week of cool days - not cold, but you can feel the chill on your arms, headache is still with me.

Over the last couple of days 4 small bruises (ranging from 1cm to 5cm in diameter) have appeared on right leg, left upper flank, right arm just above the elbow and right arm in the middle of the tricep. Right hand and left foot pain has increased this week. Although the INR is up the headache is still with me.

Having been out for a couple of hours and feeling cold, fatigued and in pain, I thought it would help my own knowledge to see if the theory that being cold effected the blood clotting. This test shows nothing significant, other than the INR has little or no change when cold and tired. The headache is still with me.

No change in pains, no change in medications and the headache is still with me.

INR has been steady for 7 days, but there are a few new bruises (each with a small lump in the centre) and the headache has continued now for 15 days. Walked around town today, had to walk across the park to pick up prescription, really tired, short of breath and very depressed by the fatigue.

Flu jab today.

INR has been steady for 12 days, a few new bruises (each with a small lump in the centre)around the stomach and lower ribs, on the right side of my body. The headache has continued now for 20 days. Walked around town today, From Tesco car park across the park around the town and back to the car park. Really tired, short of breath and in pain from the right knee, right wrist and hand and the left foot.

The headache is still with me,  there seems to be no apparent reason for the sudden increase in the INR, and I have reduced my dose to 5mg today, 6mg for two days then 6.5mg until next Wednesday. I will check on Sunday to see if it is going in the right direction.

Back to within therapeutic range, headache is still here, and I can't seem to shake it off. All other pains are the same, and there has been no reductionin cognition or speech problems. Swallowing is still a major problem, and nearly choked on Fridat on a small peiceos sandwich. It seems like I have to chew forever to be able to swallow my food. Got another appointment at the Stroke Rehab unit next week so they may be able to help with the swallowing.

woke this morning feeling slow and lethargic, checked vision with sign opposite my home, and couldn't read the largest text. On normal days with my spectacles I can read three different text sizes (normal).

Decided to do an INR as I have all the signs of oxygen starvation to the brain. INR was back to therapeutic level, but a new bruise (approximately 44mm in diameter) and small clot (approximately 2.5mm in diameter) has appeared on the left upper chest.

Made an appointment to see my GP on her next full working day (Friday 30/10/03) to talk through current issues. Headache is still with me, fatigue, joint pains and muscle pains are a little worse, but this may be due to the change in ambient temperatures.

Reduce to 6.0mg for two days then back to 6.5mg

Reduce to 6.0mg

High stress day, received letters advising that all benefits were to stop, and had to spend the rest of the day dealing with official red tape and getting forms for an appeal comleted. Got a copy of the IME report, which contains inaccuracies, discrepencies and contradictions.  INR has shot up even on reduced Warfarin. Reduce to 3.0mg

Blood in Urine, 999 call and ambulanced to RUH Bath, where the doctor explained that this was normal in some patients, without pain they will do nothing, as treatment is as risky as the bleeding. allowed home at the end of the afternoon, still bleeding, but reassured that it is not life-threatening. Miss all Warfarin tonight and check tomorrow to make a decision on dose.

INR down to expected level after stress-induced rise. commence on 4.0mg and try to bring the INR back to 3.5 to 4.0

Still dropping, but that was expected after artificial stress-induced high and Warfarin dose over-compensation due to panic on bleeding.

Still dropping, that is to be expected due to the panic-induced drop in medication. Remain on 4.0mg and test again tomorrow. This should be the lowest point of clotting protection as the dose 3 days ago was missed (72 hour half-life).