Persisting migraine

I find it hard to believe that the neurologist discharged me last week. He has decided that my symptoms (permanent numbness down the right hand side, ongoing migraines) should be dealt with by his colleague in the specialist headache clinic. No reference to whether what I’m experiencing is due to being on methotrexate (MTX) injections last winter. (I’ve researched it and am totally convinced that this is due to the MTX as I never had migraines or numbness before December). The nerve conduction studies and MRI on my brain all came back negative which is reassuring but there is no sign that these symptoms are abating. He suggested trying Gabapentin once I have been on Sulphasalazine (trying to get the rheumatoid arthritis stable) for about 3 months. Frankly, having read the potential side effects, I am not feeling encouraged to try it, as I have a lot of those problems already (such as breathing problems, eyesight issues etc!). So, having been discharged from his clinic I have no idea how long I’ll wait to see the headache specialist. I saw her briefly a couple of months ago as an in-patient but that doesn’t count as I’m now an out-patient again. So confusing.

At the end of the appointment I tried asking him about Postural Tachycardia Syndrome (POTS) as I know lots of people with Ehlers-Danlos Syndrome have it, and that it could explain the low blood pressure, feeling dizzy, palpitations and so on. But he simply said ‘We don’t deal with POTS in this clinic’ and ‘These symptoms are troubling you. Have you considered cognitive behavioural therapy?’ before shaking my hand and sending me on my way. I was stunned to see that he had ticked the ‘treatment’ box on the yellow outcomes form that I had to hand to the receptionist as he had suggested that I take Gabapentin in 3 months’ time, not now, and it is rather misleading. I had mixed feelings leaving, from relief that I don’t have a sinister condition to frustration that the neurologist thinks these symptoms are ‘just migraine’ – permanent numbness and one arm being colder than the other is not typical for migraine. In the meantime, life carries on and I just take it day by day until the next health appointment.


Blood results

Finding out blood test results is always a rollercoaster experience, they are so unpredictable. Last time I had a chance to see my results the ESR (Erythrocyte sedimentation rate) and C-reactive protein (inflammatory markers in the blood) were within normal levels. This time, the ESR was slightly elevated at 8 – (normal range is 1-7) and CRP was ok at 1.0 (normal range is 0-5.0). My Vitamin D is now back to normal levels but I’m continuing to take 1,000 International Units a day. That’s some good news, at least.

Other results that I’m not so happy about:
Lymphocytes – LOW – 1.16 ( normal range: 1.2 and 3.65)
Thyroid stimulating hormone – HIGH – 5.56 rather than 0.27-4.20.

I have no idea what this means so will need to talk to the doctor and rheumatologist about it. Now that I have bone erosions in my hands and wrists, the rheumy wants me to try Sulphasalazine (I’ve already tried Plaquenil and Methotrexate, with terrible side effects). But the next appointment isn’t til September as I’ve got to have an MRI scan for the Neurology team. (They’re still investigating why I’m numb on the right hand side and keep getting migraines).

So, the old-fashioned treatment for rheumatoid arthritis is the next step while waiting to have the MRI test and the result. In other words, hand therapy. Does this mean a splint for my hands, exercises etc? Will be interested to find out. On the other hand, my doctor said that they won’t be able to refer me to the hospital for integrated medicine which is frustrating – and it means going there privately.  Seems unfair that there’s a health lottery in London depending on your postcode. I know that scientifically there isn’t much evidence for homeopathy, acupuncture etc being beneficial for arthritis but I’d love to try them.

Constant migraines

Before December 2012, I’d never had a migraine before. Yes, I’d had headaches, but never the kind of headache where your temple throbs, you have stabbing pain behind the eyes, it feels as if you’re going deaf in one ear and when you blink it’s as if camera flashes are going off. And numbness all down the right hand side of my body. Little did I know that the numbness would be permanent and I’d have the migraines nearly all the time.

Four weeks before the first migraine (where I ended up in the Hyper-Acute Stroke Unit as at first doctors were unsure if I was having a stroke) – I started having Methotrexate injections as a treatment for Rheumatoid Arthritis. Although this medication had started to reduce the swelling in my left wrist, I felt sick all the time, had diarrhoea up to seven times a day, my hair started to fall out (not dramatically but it became much finer and I was losing more than usual), and I had skin rashes on my chest (leading to a visit to Accident & Emergency). I also developed a lung infection and took antibiotics for it.

The question is, could the Methotrexate injections have been a trigger for the migraine and permanent numbness? Would I have developed these problems anyway? Are you more likely to get migraines if you have Rheumatoid Arthritis or Ehlers-Danlos Syndrome? I’ve just had some Neurology tests so hopefully these will give some answers. Til then, I deal with it by keeping busy and drinking lots of water.

Salty solution

Last September (2012), an article on the front page of the Daily Express caught my eye. It’s not normally a paper that I’d read, but I couldn’t escape the headline screaming at me in the newsagent: ‘Salt baths ease the pain of arthritis, say experts’. Here’s the original article:

Research from Manchester University showed that high-salt solutions reduced inflammation. However, the study was conducted on mice so it would be interesting to see the results of clinical research using humans. I’d be happy to volunteer as it’s only using salt!

It took me a few months to actually try out the salt bath approach. It took time to recover from a bad reaction to hydroxychloroquine sulphate (hallucinations and bronchospasms) first, then to learn to deal with the migraines and permanent numbness I developed after starting injectable Methotrexate.

So, in January I started bathing my hands individually in hot saline water for 10 minutes per hand. I have been doing this every evening since. I use a standard mixing bowl that you’d use in cooking and line the base with table salt, quite liberally. I boil the water and fill the bowl about half-way. Then I top up the water with cold tap water, dipping one finger in to check the water’s hot but no longer boiling. Next, I simply plunge one hand in to the salty water (I do this sitting at a table as it’s easier than sitting on the sofa and less messy) and leave it submerged (up to the wrist) for 10 minutes. I repeat this process with the other hand.

I have found that doing this ritual every evening has made a big difference to the flexibility of my wrists and has helped to ease the arthritic pain in both hands. On the days when I haven’t been able to do this (i.e during a short 3 day holiday in Italy), I really noticed the stiffness returning. One downside is that it makes your hands really dry. Body Shop body butter has been a great discovery and has helped soften the skin. The dryness feels like a small price to pay for the continuous improvement in my hands.

Changing diet

A few months ago, I decided to radically change my diet. Why? Because I had a bad reaction to more than one arthritis medication (including one severe allergic reaction to Plaquenil /  Hydroxychloroquine Sulphate in September 2012). My mother had one friend, E, who had tried a special diet for over a year and had been told by her rheumatologist that she’d had a ‘spontaneous remission’. That was enough of an incentive for me to do something.I’d already cut out alcohol in summer 2012. Then in early December, I developed continuous migraines and permanent numbness down the right hand side of my body after being on injectable Methotrexate for just a month. A private migraine specialist suggested I drop chocolate, coffee, tea (all caffeinated drinks) and cheese from my diet. All things I love! Other food I stopped eating last December: dairy, anything with gluten, potatoes.

It sounds like a lot, but there are actually loads of things I can still eat, including: gluten-free porridge for breakfast with a banana, rice, lots of fish, particularly salmon and mackerel, tofu, loads of vegetables such as avocado, sweet potato, cucumber, beetroot etc, soya yoghurts, seeds such as flax and pumpkin, nuts, fruit (everything apart from citrus). I occasionally eat organic chicken but no red meat. I also drink one tablespoon of organic cider vinegar mixed with one teaspoon of honey in a small amount of hot water.

After just a few months on this restricted diet, I had blood tests done and two of the inflammatory markers (ESR and CRP – erythrocyte sedimentation rate and C-reactive protein) were back to within normal levels. This astonished my rheumatologist when I saw her on 1st March. I insisted I was feeling better (which I was, although my hands still looked inflammed). Despite this great news, I still had, and continue to have, active inflammation. This is clearly visible in my hands and wrists, and one wrist has a swollen bump between the wrist and hand, called an effusion.

Against medical advice (as the rheumatologist wanted me to try out another drug), I asked to put the treatment on hold til I’d seen the neurologist about the migraines and numbness. She reluctantly agreed, but said she’d scan my hands again with the ultrasound in June to assess the level of inflammation.

Although I realise that diet alone is probably not enough to have a remission, I keep E’s story in my mind as inspiration because I really want this to work. I know everyone responds to medication differently, but in my case the side effects / adverse reaction always seems worse than the benefits. So, for the time being I’m sticking with it.