Migraines & Triptans

[Pippa-Dippa-Doo23]

I am a 70 year old female.from the East Midlands. Had childhood migraine, but , wrongly diagnosed with petite mal epilepsy, and prescribed phenobarbitone. Late teens early adult hood, not too bad, started nursing, weaned myself of medication. 2 chronic migraines per month. Analgesics useless, dark room, cooling bands and wait. They were not hormonal, or seemed to be trigger related. When I was pregnant with my 2 children they went completely. I had and have a happy marriage, wonderful children and eventually 2 grandchildren, loved my job, especially when I went into practice nursing, and studied psychology part time. Yes migraines, but then Imigram arrived, injections first, and then the tablets. i now didn't have to take time sick, 30 mins, the pain had gone, and I could function. I eventually took early retirement to look after my parents. I was 56 and had looking back just had my last period, and my last migraine for 11 years. I was lucky and sailed through the menopause. Hubby retired, mum passed away. Myself my dad and hubby enjoyed the few years dad had left, us making him happy with his holidays , and he just made us laugh and love him more. When he died, we then took ourselves off to a little caravan in Norfolk with our recently widowed best friend. I never got out of bed. No Imigam. No local doctor would give me any. And that I'd how it has been for the last 3 years. Why they came back with a vengeance, I nor anyone else knows. GP, brilliant, prophylaxis % Sumatriptan, Neurologist appointment. So like the rest of you I have had 4/5 preventatives, ONB, Ajovy, the first 2 botox treatments made no difference, the third on 28th December just gone, left me in that much excruciating pain from the next day, I couldn't bear it, and didn't know what to do. It kept me in bead for 2 weeks. Now if I had taken Sumatriptan I would have been fine. I had 12 per month. I was told by the Neurologist that I was ovrrmedicating so getting rebound 'headaches:' I contradict migraines, there is a big difference, so now I am down to 6 per month. So every month now because I have chronic constant migraine that only Sumatriptan relieves, I have to pick the 6 days I want to go out of the house do something, she, see friends or family, see a film, theatre, go for a meal, etc. Because the rest of the month is spent in bed with lavender spray, cool pads, and the occasional Nytol Herbsl if I cannot sleep because of the pain. It is nice to know I have 72 days a year where I can go out like a normal person, thanks to Sumatriptan. But god forbid I should take anyone and live a normal life again!!

[Moon_Struck]

Sorry to hear of your migraines - can relate as I have been on a similar journey throughout my life.

Do you think there is a possibility that the migs are hormone related - it would indicate so as when you were pregnant twice, they went completely. Fortunately, you sailed through menopause, but now maybe your estrogen levels / hormone profile have dropped lower at 70.

Obviously, we're all so different biochemically, constitutionally, but for me my migs came back with a vengence when my periods stopped, indicating that estrogen was a protective factor. My triggers are multiple and varied, stress, dehydration however after many years I attemping to address underlying causes.

Sumatriptan is not a good to take regularly and as one gets older - I'm sure you are well aware of the effects on the blood vessels of heart.

Also the level of body toxicity is something to consider. It is not good to ingest a high level of medications. There is a connection between liver toxicity and meds.

Would you consider an alternative approach to your mig management.

I would strongly recommend working with a Naturopathic Practitioner or a Herbalist and taking a different, holistic approach. Detoxing, looking at health of digestive system, colon, adrenals, hormone levels. Healing as opposed to suppressing with toxic meds that are putting more of a burden on your system, as you are rebounding - your poor body is having no chance to repair/heal itself. Your system is clearly not happy, please do not accept that you can only live for 72 days per year.

At 60, I decline any medications for mig (or otherwise). White Willow herb during an attack or a personally formulated liquid remedy made by a NIMH Herbalist which works very well.

I have also found Acunpuncture to be hugely beneficial.

Do you take good quality magnesium?

Wishing you wellness and maybe a different approach, there is always hope?

[Blearyeyed]

Have you considered speaking to another GP?My daughter has chronic migraines , like myself , but she is like you and gets relief from Sumatriptan.

She gets about 14 a month , but she has as yet never been told she could not take medication for it when it was required.

She gets a monthly prescription of 18 with no issues at all. She gets 12 50 mg as the first dose , then gets 6 100mg to take it the first dose worked but the Migraine came back , or for a Cluster episode. She takes it for the Migraine not as a preventative. They should be offering you different help for that alongside the Botox protocol.

Rather than having a rebound headache , which can be common with other painkillers like Codeine , you may just be having a cluster which would last a few days . Sumatriptan can cause a rebound which feels like a Migraine but if you have proved that is not the case for you , you should not be limited in your options if treatment.

If you haven't been given another medication , alongside your Botox to help prevent attacks , and your quality of life is being affected so much by not having medication to rely on I would definitely ask for a second opinion or complain about your treatment.

[Pippa-Dippa-Doo23 in reply to Blearyeyed]

Thank you so much. Would you mind if I show what you have written to my GP and Neurologist. In all fairness my GP has been wonderful, but is now acting on the Neurologist say so. I had 1st Botox in June, no side effects nothing else either. 2nd I went for in September where I was told I was in medication overuse by the Neurologist. I have 12 per 28 days. I have chronic migraine most days, so unless I 'need' to go out I don't take a triptan. I stay in bed, suffer, and cope as best as I can. The days I 'need' to go out I take 1 triptan, some days 2. No I was taking them too often. I could only take 2 per migraine day 6 days out of 28, other pain relief on other days. I asked her for a prescription for smarties, they would be just as useful as Paracetamo/Ibuprofen, which I never take, and I cannot take codeine. So she asked me to stop taking the triptans for a few weeks and take normal analgesics. She wasn't listening was she. So you think that will help, yes, well I had my doubts. I Spent 3 weeks in bed in horrendous pain, lost a stone in weight, until my dearest hubby was about to tear out what little bit of hear he had left. My daughter emailed the Neurologist, I couldn't see. She rang and said she thought I would have gone through 'cold turkey' by now. I said I am a retired nurse, cold turkey is a symptom of withdrawal from long term use, and vast quantities of, a substance that has been used without any form of correct dosage or medical supervision.

I am not an addict. I am still in chronic pain, the.only thing that relieves it is Sumatriptan, and you took it from me!!

So I got my prescription for 6 back. So hopefully I can have 6 good days out of 28. The next and 2nd Botox treatment, as they didn't give me the September one, we tried the withdrawal!! It was Dec 28th. This time I had a higher dose in the right side of my temple,neck, back of my ear and shoulder. The next day I wasn't sure if I had had a stroke, but I couldn't move, chronic migraine had gone from 11/10 to 19/10 and I was a little bit afraid. Anyway hubby did all my obs, and I was definitely alive, by then talking a lot more coherently, but walking was a near impossibility and I could not see as good as I normally could.

GP said it had to be dealt with by neurology. Yes they were good, and sent someone. It was the botox. It sometimes makes it worse for a few days before it gets better. Why didn't it happen before, I had a higher dose this time. A couple of days you will be fine. Two weeks later, I managed to get out of bed. More weight loss, and I am not a happy bunny. Next appointment March, and I certainly don't want Botox. I shall go to the appointment, but I doubt there is anything else they can offer. So why not let me have what does work!!

Sorry, if I've rambled, I appreciate your care and your input, x

[Blearyeyed in reply to Pippa-Dippa-Doo23]

I've checked with my daughter and amended the monthly number on the script.She gets 18 , 12 at 50mg , 6 at 100mg only to be used at the second dose if the headache had responded to the first dose but not cleared.

She can only take them for four days in a row before seeking other help for a cluster episode.

In total , she takes approximately 16 a month , and believe me if she takes a day when she just has a headache , rebound pain for an hour or two , or no pain at all she is jumping for joy not reaching for the box to take one " just in case" .

She has been on this current regime for 8 months.

At the moment she is having about 14 days of Migraine a month , down from 22 a month when she was not on Sumatriptan.

This isn't taken as a preventative though , she is waiting for a Pain Clinic appointment for that. At the moment the GP is doing what he can with guidance to find one.

She tried Amitriptyline at night which increased the headaches and caused insomnia , the same happened to me , we seem to have a Familial intolerance to that class of drugs.

Currently, she is on the second week of a Betablocker , but it isn't having an effect at all , just as it didn't fit me , because we both have borderline Hypotension, and I have Chronic Dysautonomia, so all it did was increase Fatigue and Insomnia. It's likely that this will be the next drug to tick off the list.

I received a local anaesthetic injection to the skull to see if it would work before being offered Botox. I never got to the point of considering trying it , although I'm sure it works well for many. I have EDS , so local anaesthetic does not always work with this illness. I didn't know this at the time I tried it . The effect wore off before I'd left the waiting room where I had been told to sit for 30 minutes to check for sude effects. By the time I got to the car the head was pounding and the injection sites swollen and burning. I now know I get an autoinflammatory response to injections and blood tests and need fine needles for any job to reduce edema.

By the time I got home I had the worst migraine I had ever had , and as I had Dysautonomia, undiagnosed at the time , a rush of palpitations, breathlessness and overalertness. I had a migraine cluster for three weeks and insomnia for a month . Given the reaction when they rang to book the Botox I said I didn't want to try it and they were happy to agree.

Like any treatment , Botox will be a miracle for some , but feel like murder to another.

Your Neurologist is trying to follow the steps down through the treatment pathway , although I am surprised that they haven't also been trying you on other oral treatments for prevention, unless you have already tried them all without success.

Unfortunately, Migraines can be triggered by various physical pathways not just by our behaviour , so unless you find which path is being triggered internally it is hard to find a preventative treatment that will work.

What they don't consider is the impact on our lives and symptoms while they experiment with which treatment works. I'm surprised that they thought it was wise for you to go cold turkey to prove your pain was actual Migraines and not Rebound pain with no other support this is very poor management.

I , finally got offered Indometacin, this is not common but I get a full spectrum of Migraines , including diagnosed Activity Onset Migraine linked to the Tachycardia syndrome that causes my Dysautonomia. I take this medication before doing physical activity , like going out when I need to walk around or exercise.

It was finally getting Dysautonomia treatment , and a medication for improving circulation that my Migraine activity reduced the most. It has also been controlled after flaring by discovering I had B12 Deficiency Anaemia and need two monthly injections for that .

I still have a low grade Migraine of some sort each day and aura episodes but the pain score is at a level that I can still function at , even if it is at a very slow pace and excludes the chance to work. But , I also have various pain medications either preventative or for attacks if different types , there's about 6 different medications in my arsenal they just aren't used at the same time. Some are only used twice a year.

Have they tried offering you other nerve medication for daily use like Pregbalin or Duloxetine, or the combination of both ?

I was originally given this for Neuralgia and Fibromyalgia, but for a number of years it did reduce the number of Migraines I had , or acted as a preventative.

[Pippa-Dippa-Doo23 in reply to Blearyeyed]

You have explained so much, and you yourself are really suffering with additional conditions also. Thank you for taking the time to reach out.

I have been on every preventative going, including Amitryptiline and Pregabalin and Gabapentin. I have also had beta blockers. The worst I had was Sodium Valporate, anti epileptic drug. It caused me to have health issues where I wasn't fully aware of what was going on and I lost my ability to speak coherently. Fortunately I was a practice nurse and one of the GP's there picked it up after I was admitted to hospital with a suspected brainstem stroke. I am now on Topiramate, have been for 3 years 100mg twice daily, done nothing. I had the new injection that came out Ajovy, pinned my hopes on that, and it never made a difference. I think my Neurologist is probably as frustrated as myself.

Thank you so much for your help and concern. Wishing yourself and your daughter well, x

[Blearyeyed in reply to Pippa-Dippa-Doo23]

That's a shame. I took Topiramate for exactly 4 days and had to stop , not only did it do nothing but I didn't sleep for the four days .

If you aren't getting any relief as far as you know from Topiramate have you tried tapering off it. You might find it was doing something , but if you feel no difference at all there seems little point to keep taxing your body processing it for no relief.

Have they ever tried you on Angiotensin 2 receptor blockers.

I'm pretty sure one is available on the Nice list of preventive medications ( even if it isn't the best one ) , it's another off book medication but studies found ARBs can reduce the pain level and frequency of chronic migraines by between 30-50% for people whom don't respond to other drugs.

[Pingez in reply to Pippa-Dippa-Doo23]

Hello. Fellow East Midlands migraine sufferer here. Also struggling but unlike you am having Botox and after 5 months it's starting to make a difference. I still get bad nausea and sickness though which Botox does not address and I am still somewhat reliant upon Zolmitriptan. However the reason for this reply is to tell you about something called gepants, which is a new promising drug specifically developed for migraine. It is available in the US and the EU but not yet in UK. Nice are looking into it now and will decide in March.

It can be used both for episodic and chronic migraine and unlike triptans it does not constrict the vascular system and so is safe for us oldies. It also has no rebound effect so can be taken every 2 days to prevent migraine and gets better the more you take rather than worse as can happen with triptans.

Now the catch...the cost. It is expensive and on this ground alone may be prohibited. But I'm crossing my fingers that it will be available in some form in this country. I am desperate for a hip replacement and would love a short course of these to get me over the worst of this, say 3 months, which I probably could afford if I had to pay.

Perhaps you could look out for these on the Internet. They were developed by Peter Goadsby, a man worth looking up. We both sound like worthwhile candidates for gepants. I know of someone who cashed in her pension pot and flew to America for this treatment and it has transformed her life. Fingers crossed for us. X

[Pippa-Dippa-Doo23 in reply to Pingez]

Thank you so much for your reply and the information. Yes I will look into it, and look up Peter Goadsby.

So you not only suffer migraine pain but joint and muscle pain. Joint pain affects the way we move causing more pain in other joints and our muscles. Not pleasant, and pain relief or rubs, don't always help. I do hope you get something sorted in the not too distant future, but probably better not hold your breath.

Take good care, once again many thanks, x