19 August 2015
Went to the Doctors yesterday because I am so tired of headaches, 
day in day out, the pain in my head just won’t go away. Sounds like cluster headaches but I have no break in them, so possibly migraine the doctor reckons. She suggested that I try some Amytriptaline at a very small dose at night. However, Boots the Chemist say their suppliers don’t do a lactose free version! So, I have a conversation about whether they can get any from elsewhere and here is the rub: they use two suppliers who in turn have a range of manufacturers they use, and they don’t make them lactose free…. So I say “can you not find a manufacturer who makes them?” I add “ I can go on the internet and find out who manufactures some and give you the information”. But, what the guy is saying is that if their suppliers do not buy from these manufacturers then, no, they will not get them.
Thanks BOOTS, what a ridiculous situation to put me in!
Maybe I will have to go back to my Doctor and ask her to supply me with a separate prescription so that I can trawl the chemists in the towns trying to find a different one who uses alternative suppliers to BOOTS, in order to find a lactose free version whilst coping with a head that is being ‘drilled’ constantly.
I also talked to her about my mood being up-and-down at present, becoming annoyingly teary throughout the day. It seems the past 6 months has finally caught up with me. My marriage breaking down and leaving my husband, moving home to a new area not knowing anyone and my mother dying, along with the trauma my sister is constantly putting us all through with her constant bizarre and unforgivable behaviour with my Dad.
After a visit from a lovely lady (Alzheimers Support) giving me all sorts of information of what was available for Young people With Dementia, I joined a group for a ’stroll and supper’ at a nearby park. Not knowing the area at all, I planned my bus journey on the net, which stop to get off with a walk across the park to the meeting place. Yes, I felt anxious as I left and found I had forgotten my mobile phone, but ‘not sweating the small stuff’ decided it was not important enough to get it and risk missing the bus. It was a good night and met some lovely people, but I was excruciatingly aware that I was the only single person there, and this upset me greatly. So, I am going to ask whether it is at all possible to find out if there are other people with dementia who want to meet up as a group singly.
So, all in all struggling a bit at the moment.
Handbagwarrior; verbal ramblings 
Gill, The past year has been horrendous for you. Just that you are hanging in there is an amazing accomplishment. I take the amitriptylene (sp?). This is one of the antidepressants I take. I have been trying to get off of it because it is a trycyclic antidepressant, and these medicines are contraindicated for people with dementia! There are many other choices for antidepressants, and god knows you deserve them. Let me know if I can help.
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Feel like I am drowning right now Paulan, the Amitriptalylene (my spelling is wrong!) is supposed to stop the headaches. I shan’t take it anymore, a few days is enough for me to realise it is having a bad effect for me. Just wish I could stop crying all the time! Ridiculous because I am not even remotely miserable. Thank you for your support and care – think everything has just caught up with me; my Mum dying, marriage ending, moving etc…I think I just need a little time, and I am definitely HANGING IN THERE 🙂
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There are many other antidepressants that might help you sleep better at night and help you with nerves and depression. You just have to ask the doctor. Let him know that you have Alzheimer’s and have been told that tricyclic antidepressants such as amitriptylene are contraindicated. Many doctors don’t know this unless they have experience treating people with dementia. I would like to see you get some relief from another antidepressant. Stay well my friend.
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Oh, Gill, all of us would be crying after the time you’ve been having. I can’t even imagine the stress and disappointments you are dealing with. At some point, all of this builds up until we “explode” in some way, and usually not with this many issues. By the way, I read “All the Light …” — loved it!
Be kind to yourself — you need it. I just wish I were there to help. Nancy
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Thank you Nancy. I think have just exploded and hopefully am now on the dealing with it side. I love how you reach out to me, it helps. Glad you liked the book, me too! 🙂
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I am so in awe of you that you are doing all of this with Alzheimer’s! A lot of people can barely manage what you are experiencing and they are 100% healthy. I’m rooting for you to find the right meds and a singles group. They’ve got to be out there somewhere! HUGS
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Thank you, I really appreciate your encouragement. It makes a difference because when I read this I think; No, I will not give in, I will try and get things better for me and for others. 🙂
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I was thinking about you and hoping to see a post soon to know you were okay. Your really are an amazing woman. What you deal with is more than most people without your issues. And you take such a pro-active approach. You don’t wear phony rose-colored glasses but you take joy where you can find it.
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Thank you. Sometimes I wonder whether I should post so honestly, but glad that it’s received without judgement. 🙂
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I’m not surprised you have headaches and are prone to tears after all you have been through – and are still going through Moving house is traumatic in itself without all the otehr things such as your marriage ending and your mum dying. I hope you manage to meet some single people with whom to have coffee or lunch or do things together. I’m sure there must be other non-couple people who’d love to meet up.
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Thank you Mary, I am trying to put it all into perspective. I know there must be single people who want to meet up, maybe I will have to start the group myself but I think that will be a good thing to try. 🙂
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Hello Sister, Its Brother typing! Sorry to hear about the ongoing headaches. Like the others above I’m not too sure that the heavy duty anti depressants are a good thing. As for the chemists, well don’t expect much from Boots. Like all giant organisations they are pretty stupid when it comes down to addressing individual customers needs. Maybe its some thing in your current diet that is contributing to the extreme headaches?
It maybe worth doing some research in that area.
The only thing I don’t agree with you on is that I don’t think that our sister’s behaviour is contributory. She’s been manipulative, arrogant, underhand, self obsessed, narcissistic, devious, compulsively lying and petulant towards us for years now! There’s not been much change your not already used to! Yes her behaviour is wilfully and continually awful but we both know that she has been like this for ages and we just have to accept that she is out in the community and has some sort of undiagnosed to mankind personality disorder that means that her unwarranted bitterness is there, has been there for many years and as sad as it sounds, until she decides to remove her head from deep inside her bottom and sees the real world again rather than the warped, sick and twisted world she lives in, she’s unlikely to change!
So ignore her. I am more than capable and willing to fight the relentless ongoing fight with her for both of us so you are not on your own. I know that its difficult but if its humanly possible in any way try to continually exercise every day. walking, swimming, core exercises that you can do at home (crunches/ sit ups, stretching, press ups, as you know, the list goes on..). It not only obviously burns calories but it will make you feel better after a month of doing it. With each month you are bound to get some benefit. Even if you only start with 5 mins before expiring. set a goal, work towards it and stick to it! You never know you may even brainwash yourself into liking doing it!
Keep you chin up Sis. You can do it. And above all. Trust Many, Love few and always paddle your own canoe!
All the Best, Talk soon, Martin X.
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Love you Bro. Thank you for your words of encouragement…doing exercises as I write and love it! Am going to a therapy gym this afternoon to book some sessions. As for our sister..I dreamt I was shouting at her that she was inhuman, felt good afterwards.
Nice to see you reading my blog 🙂
xxxxx
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Sorry to hear you are struggling, Gill.
I have been taking 25mg Amitriptyline since being diagnosed with FM in 2006. You can only get it by doctor’s prescription here in Australia. I have had periods of severe back, hip & neck pain etc since 1980. Had lots of tests, scans and specialist appoints over the years, but finally a spine/muscular skeletal specialist diagnosed me after nerve and facet joint blocks in my spine didn’t work. Amitriptyline was prescribed by my local GP for sleep. Two years ago, I finally had a formal Sleep Study done at the local hospital and was diagnosed with Sleep Apnoea (but only when lying on my back and entering the REM stage of sleep). I must always sleep on my side.
Several times I have had to wean myself off Amitriptyiline as it seemed to stop working. This was done by gradually lowering my prescription from my Doctor over several weeks. e.g taking 20mg for one week, 15mg for the next week and then 10mg for the next week etc. By the time I was ‘weaned’ off it, I was hardly getting 2-3 hours sleep per night, so had to go back on it after a few weeks. The short break from the drug seemed to make it start becoming effective again when I re-started it. Just like many analgesics, if you take too many and every day, they gradually lose their efficacy.
Amitriptyline, we discovered, it also responsible for my dry mouth, so have to drink a bit of water regularly.
Note: I find it’s better to avoid normal or prescription analgesics regularly and just take my prescription analgesics on an irregular basis,or when the FM & back pain gets intolerable. Sometimes a nice slow walk outdoors doing my photography hobby distracts me from the constant pain. Grains & dairy seem to exacerbate my pain levels too so I keep consumption to a minimum. I have been coeliac and allergy tested with a NIL result, but maybe I fall into the newly discovered non-coelic grain intolerance group. Eating several slices of bread does seem to make my back pain worse. I have to watch the acid/akaline balance of my diet too. At the end of winter, when I seem to eat more meat/grains which are highly acidic, I always seems to have an exacerbation, or flare-up, of FM and inflammation resulting in the affected hip/foot/ankle requiring cortisone injections to help me walk more comfortable. A couple of times I’ve had to use a walking stick for 7-10 days when it was too painful to walk (even around my flat). I try not to eat too much cooked tomatoes which are highly acidic (but not when raw)also. I love tomatoes.
Amitriptyline is a tri-cyclic anti-depressent and is used in low doses for people with chronic pain and sleep problems. (if you were diagnosed as clinically depressed the dose is about 7-8 times as much per day I believe).
To my knowledge you shouldn’t stop taking this drug abruptly, but gradually lower the dose. Maybe you didn’t take it for long enough to have to gradually wean yourself off it? I vaguely remember having to take it for about 4-5 weeks before I really saw the benefit. Never take this class of drugs without diagnosis & a Doctor’s prescription.
In the last 5 months of working in 2009 I had severe headaches every day and was having trouble concentrating and working. My GP sent me to an Ophthalmologist for testing and I had a brain scan etc. All with a nil result although the Opthamologist did diagnose that I had corneal exhaustion from 40 years of wearing gas permeable contact lenses. This means the eye had stopped making tears normally and I had developed a ‘dry eye’ condition. He recommended to stop wearing contact lenses and wear glasses full-time again.
Secondly, they could no longer make a stronger contact lens for my severe myopia (short-sightedness) and astigmatism (double vision) anyway, so after 40 years I had to go back to wearing thick glasses permanently. I wear my distance glasses all the time and just put them on the end of my nose to read. I did have reading glasses but they were useless as I had to hold a book etc at exactly the right distance from my eyes and I got (FM) shoulder and neck pain back. Secondly, the frame kept breaking and I decided I couldn’t afford to pay for reading glasses anymore, so now just use the distance glasses (which are also very expensive).
Initially they thought it was cluster headaches (which are more severe than migraines), but my symptoms were not quite right for the cluster headache diagnosis. They were certainly worse than migraines.
I am not a migraine sufferer and have had perhaps 2-3 true migraines in my life.
After a month off work and sitting in a darkened room for the 1st week, it was many days before the severe headaches stopped. When I went back to work after this month, within 2 hours on the first day back, I developed this severe headache again. Finally, these severe headaches, together with the constant pain of FM (especially in my wrists, elbows, shoulders from typing) and poor vision meant handing in my notice and quitting working forever. I had already severe lumbar disc disease and had one lot of lumber spine surgery which helped for a while, but ultimately the back pain was exacerbated by sitting at a desk all day.
Anecdotal evidence suggests that many FM sufferers go through periods of severe headaches, so in the absence of any other evidence, perhaps the period of severe headaches were an FM symptom (combined with eye strain on the computer and corneal exhaustion in my case).
To this day, now I’m not working and live on a Govt Disability Pension (I have several other health issues including severe Hypertrophic Cardiomyopathy inherited from my Mother’s side of the family).
Sorry about the long comment Gill , but I wondered if my experience could help. The only real way to help myself is to research diet, food intolerance and all my various health conditions, then over many years of trial & error I’ve gradually found a way of life which helps the pain. I must ensure I drink lots of water and my tissues fully hydrated too, as dehydration constricts the tissues, especially in my back muscles, and makes pain worse.
Stress (at work) and sleep deprivation also contributed to my ‘pain’ and ‘cognitive problems’ many years ago.
I get off the computer as soon as the first hint of a headache appears these days and try to vary my stance/position/walking/sitting and watch what I eat. I live very, very simply and try not to stress. If I wake during the night with back or hip pain, I try to stay in bed in the morning until I feel fully rested.
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Thanks Vicki. This has been a great help to me. I have emailed you a reply. Some of this resonates with me totally, and I am going to try some things. Getting off the computer now my head is starting….:)
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Gill, I’m so sorry to hear things are so difficult at the moment. I hope you know that you have many, many friends – many of us have never met you in person – who are here for you whenever you need us. Stay strong x
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Thank you Duncan I am grateful for your support:) x
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Thanks for being real. Hoping things have improved in past couple weeks. Really enjoyed seeing you again. (( prayers )) — your friend, Tru
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Hello Gill,
Wanted to let you know that your article is included in the dementia “Symptom Perspectives” monthly links tonight, September 30, 2015
https://paper.li/f-1408973778
I would like to thank you for sharing your lived experience. My hope is that these words and projects can become valuable resources for change in relationships, treatment, and policies.
Much thanks,
Tru
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Thank you Tru. I hope so too.
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