HELP WITH REBOUND MIGRAINES AND COMING OFF TRIPTANS

[pump321]

I am at my wits end! I have been a migraine sufferer for over 40 years, I am 76 years old. Things are so bad now that I am in bed every day until about 4pm suffering from rebound migraines. I take Zomig (Zolmitriptan) and over the last 20 years they have just made things so much worse but if I don't take one I become so sick and dehydrated I could potentially end up in hospital and I know they don't want people like me clogging up the system so I take another Zomig and go to bed. I am under a neurologist who has kind agreed to give me the new CGRP injection Ajovy and although at first it helped I think it has now made things even worse. I've never had a very good life spending 3-6 months of every years in bed if you add up all the days I am out of action. I've lost all my friends because I can never make arrangements to go anywhere and they are so fed up with me and my migraines. My husband is very supportive but we are now both isolated by my condition. Nobody rings us up any longer, it's very sad. I am now at the end of my tether. My GP has tried everything but nothing works for me so I just get up, have my breakfast and go back to bed every single day and that's how my life is. It's a chronic condition and I can't see any way out of it. Is any body else suffering like this, I feel as if I am the only person in the world in this awful state. I would love to hear from somebody else who knows what this nightmare is like.

[Cat00]

I've had chronic migraines for about 30 years, I've had Ajovy and Emgality but it stopped helping after the first year so I'm back on Botox. I used Zomig for about 25 years but it stopped working completely a couple of years ago. So I'm on Eletriptan and Naproxen now which work about a third of the time.I am very strick about only taking painkillers 8 days a month so I don't have rebound but they are still chronic. I have four other chronic pain conditions so I'm in pain all the time anyway.

The only thing that comes to mind when I read your post is that if I went back to bed everyday that would make me much worse. I'm an insomniac anyway so I have a bad relationship with my bed but in general if I go back to bed after breakfast I can guarantee the migraine will stay. I have to get up and moving, so regardless of how bad I am I go out after breakfast, usually to the gym but if I'm too bad for that I just go out for coffee.

Obviously it doesn't always work and a lot of the time it comes back later in the day but I usually get a bit of a break, but only if I get up and move.

[pump321 in reply to Cat00]

Thank you for your kind reply Cat00. My migraines and the nausea is just so bad I cannot do anything at all. There is no way I can even get outside the back door! I am totally crippled and completely out of action most of the time. I also have chronic back pain so have to take pain killers although I do try not to but life is quite intolerable. I sometimes take Eletriptan to try and break of the cycle of Zomig. Naproxen just mess my stomach up. Yesterday I took an anti sickness tablet, had some crystallised ginger and drank some peppermint tea and took a 2mg diazepam and didn't go to bed and gradually I began to feel better as the day wore on. I'm going to try not to go back to bed when I feel so awful and see if that helps but it will be really hard as I feel so ill I cannot describe it. Thank you for taking the time to reply to me.

[Cat00 in reply to pump321]

I couldn't stay up if I took diazepam I'd be too dizzy. I have to take Omeprazole before the Naproxen otherwise the Naproxen can give you horrible things like stomach cancer. They say after the age of 40 Naproxen should always be taken with Omeprazole, I do find Omeprazole messes with my stomach, but I have the nausea/vomiting style migraines too so it's often hard to tell which particular ailment is upsetting my stomach !It's very hard, I also a supportive husband but he is at work until 7 in the evening and I have two young children at primary school, but yes I don't have a social life as such especially one that would involve going out in the evening, and I don't drink alcohol, which in this country makes it harder too, I lived abroad most of my childhood.

I think for anyone in chronic pain it's vital to find reasons to live, I have lots of interests. I was so ill by the time I left university I've never been able to have paid employment, so no career. But there are things I am passionate about, and they help me through. I was suicidal most of mid teens and 20s, it's taken a long time to get back to living!

[pump321 in reply to Cat00]

I'm so sorry to hear you have had such a difficult life and have two young children to take care of. I had to give up my social life as there was no way I could continue to keep cancelling everything at the last minute. People do not understand migraine and can be very cruel. I am a very strong person thankfully but I feel I have missed out on so many things over the years when I know what amazing lives other people have. I couldn't take Omeprazole to protect my stomach with the Naproxen. Thank goodness my husband is supportive but we are both lonely without a social life. People just ignore us now as we are never able to arrange anything with the friends we used to have. We just do what we can when I have a slightly better day but it's not very often. I'm pleased you seem to be coping under such difficult circumstances and making the best of your life and have lots of interests. It was so kind of you to reply.

[Cat00 in reply to pump321]

I hope things improve for you, these thingd often ebb and flow so. I find regardless of all my pain it has periods of being worse and then a bit better so hopefully you will get a break soon xx

[pump321 in reply to Cat00]

Thanks Cat for your kind words. I think I just get to the end of my tether and then I have a bit better day that gives me hope and keeps me going even if the next day I'm thrown back into the rebound cycle again. It also gives me hope that I am not alone with my struggles, it does help to hear from others whose lives are so badly affected. I began to think I must be the only person whose life is such an awful mess xx

[Sonicfairydust]

I’m so sorry to hear this I really feel for you. I’m in a similar situation with extremely complex chronic health, Lyme, 12 coinfections, mold toxicity, ME/cfs, hypothyroidism, insomnia, migraines, light and sound sensitivity, vertigo, tinnitus,digestive, immune, circadian, endocrine problems etc… I’m mostly bed/ house bound and very isolated. The only humans I see are my carers and my lovely cat. I take sumatriptan for migraines and have tried all the meds available and sometimes nothing works. I’ve had migraines for almost 30 years. It’s so easy to become addicted to meds when dealing with awful health, just wanted to let you know you are not alone!

[pump321 in reply to Sonicfairydust]

Thank you for your reply Sonicfairydust. I'm so sorry to hear you have such complex health problems and are bed/housebound. How sad you have so much to contend with, it just doesn't seem fair that some people have so much to cope with. It does make me feel I'm not so alone when I've spent so many years of my life in bed if you count up all the days I am completely out of action. As you say, it is very easy to keep taking medication just to ease the pain a little but I find I have to take my migraine medication to stop me getting dehydrated through being sick and then ending up in A&E where I cannot imagine they would be very sympathetic especially now things are so bad in the NHS. I feel that you have so much more to cope with than me and feel comforted that you have reached out to me and I don't feel so alone. I often think there must be somebody out there whose life is so hampered by debilitating illnesses, it's just that I don't know anybody and it makes me feel like a reject as nobody bothers with me anymore. I will think of you and so glad you have carers and a lovely cat who keeps you company.

[Pingez]

Hello. Fellow sufferer here. My heart went out to you when I read your message. I am 67 and in a similar boat to you. I agree what you say about Zolmitriptan because I take this too. All it does is postpone the inevitable rather than solve things, but it's all many of us have to give us a break from the nightmare. I think that triptans in general are bad news for migraine sufferers as ultimately they make the problems worse but when you have so few options and just want some peace they are hard to resist. I am currently taking both Botox and CGRP injections as a combination. I've had to go privately to do this since NHS only offered one type. Initially I had Emgality which worked brilliantly but only lasted 9 weeks before it started to fail. Since then I've done 6 months Ajovy which never worked so well and am in the process of switching to Aimovig to see if this is any better.

I remain optimistic but it does get hard. I am lucky in one respect as the Botox is having an effect. I'm in bed at present recovering from a migraine this morning which miraculously only lasted 4 hours instead of the 4 days I used to get. I'm going to have a quiet day so as not to start anything up again and hope for a better day tomorrow.

I know how you feel about being isolated. I too have lost all my friends. Only 1 has ever bothered to keep in touch and ask how I am, for which I am grateful to her, but she leads her own life. She's currently touring Australia with her husband. I bear her no ill will, but it is hard to take sometimes when you are stuck in your bedroom with black plastic bags and black bath towels covering your windows to keep out the world.

A little ray of hope for both of us. There are some new drugs called gepants being discussed by NICE at the moment and will give a decision in March. These are tablets like triptans but do not constrict the blood vessels and are safe for oldies like us to take. They also do not cause rebound headaches. In fact the more you take, the better you are. The only downside is the cost, but hopefully something might be arranged. They have been in the US for a few years now and are also available in the EU! Thank you Brexit voters.

We can only hope they get ratified in this country soon.

I learnt about these last year when I zoom attended The World Migraine Conference. It is open to all to join for free and lasts 8 days. Every day they have 2 guest speakers talking about a multitude of topics and you have 24 hours access these discussions.

The next one starts around March 8th and I strongly suggest you sign up for it to give yourself a much needed boost and some hope about the future.

Just do a search for it on the Internet. Put another message up here if you are struggling to find it and I'll try and find a link for you.

Hang on in there my darling.

Best wishes ❤

[pump321 in reply to Pingez]

Bless you Pingez for replying to me and offering so much support, thank you so much. How kind of you when you were in bed recovering from a migraine. I really hope you are feeling a bit better now. We are both in the same boat it seems, who would believe that migraine can impact our lives so badly. Zomig are certainly evil little pills but like you said when you are in so much pain there is little choice but to take one just to give us a little break from all the pain. I try so hard not to take them but usually have to give in, take one and go back to bed. I have been on Ajovy for 11 months and it worked quite well to start with but doesn't seem to be working at all now. I haven't had any Botox but I don't think my head would stand the injections. I can imagine how you feel with your friend touring Australia, we are pleased for them but it is very hard to watch others have such amazing lives whilst we are almost tied to our bed with the blinds down and the phones all hidden up. It's so hard to have workmen in the house if I have to go back to bed, very awkward, luckily my husband can let them in etc. I also watch the Migraine Conference from America so have also heard about the new gepants medication that is on the market. Hopefully they will be available to us before too long but I expect they will be very expensive. I am very grateful to you for taking the time to get in touch. It is a comfort to know that there are others like me whose lives so badly affected by migraines. Most people who say they are chronic migraines sufferers seem to be able to go out walking with a migraine and to the gym etc. but I cannot get outside the back door, I'm just too ill to do anything. Many thanks again. With my best wishes x

[Pingez in reply to pump321]

Thank you for your kind words. I wish we both a little more to be optimistic about, but at least we are not alone. I also have an understanding husband and I know it must be so hard for them also isolated and unable to do much to help. Botox might be worth a try for you. I was hesitant at first, but I have found a very proficient neurologist who can do all the jabs in about 3 minutes. Most of them are at the side and back of the head and aren't too bad. There are 7 in the forehead and he's very quick and he always does these first to get them out of the way. It's certainly not as painful as a migraine.

Oh, by the way, this one was a bad one. Coming to the end of my Botox 3 months. I'm still here fighting it 38 hours later. I've promised myself a triptan at 4.30 tomorrow morning if it hasn't gone off. That will be 60 hours since my last triptan so I should be OK to have another.

Life is so hard isn't it?

Sending all my best wishes to you X .

[pump321 in reply to Pingez]

I feel so sorry you are still suffering after 38 hours! You are very good to wait 60 hours before you take another triptan, you must be feeling quite desperate! I am so pleased to hear you have an understanding husband too, it helps so much to have their support. I have been suffering with terrible nausea lately as well as the migraines. I have been in bed all day as I have to lay down, then it developed into migraine so I took a Zomig at 6pm and slept a couple of hours, it's a real nightmare living like this. I achieve very little sadly which does bother me but there is nothing I can do about it. I would love to try Botox but, like you, I would have to find a good neurologist and one I could trust who knows what they are doing. I don't know if my neurologist would be able to do botox. I only saw him once and then a nurse took over my case and she rings me up to discuss how the Ajovy is working etc. Take care and I really hope the triptan works for you if you have to take one. Fingers crossed for you and best wishes x