So i haven't posted in a while, lately i've given myself more of a kick to start looking after myself and my needs better than i have been. I find the more years im ill for the harder it becomes not to get stuck in a rut because nothing seems to help.
I've Found Cordial that doesn't contain Sweeteners or anything Artificial and have been focusing on drinking as much as possible each day, I was hoping the increase of fluids would show some relief but no change on the migraine front...
The last few months have been really tough, not only has my depression gotten worse due to turning 20 an feeling so imprisoned in my own body but my mam ended up in hospital for an Op which led to a Sepsis scare, nearly two weeks of hospitals,bunches of triggers caused constant fibro flare and migraine that was only barley controlled by *Cocodamol 30/500mg *Naproxen 500mg *Cyclizine 50mg *sumatriptan *omeprazole 20mg *kalms,
that was just over a month ago and ever since my fibro has just been getting worse and worse, im finding im struggling with more walking, simple tasks of getting dressed,taking shoes on and off, sleep is either impossible or the only thing i can do, my pain killers aren't touching it and im afraid that if it keeps going like it is my only choice of getting around will be a chair...My Migraines are chronic as usual never getting a break from one attack to the next.
I'm having a lot of trouble with,water retention,my stomach bloating is super bad and constantly at some stage of puffiness and also sudden fainting spells that feel different to others i've had, these seem to start suddenly in my lower body making me drop before i go in and out of consciousness...
If anyone has any tips,advice or know what i should do please comment.
(P.S. i hope ive written this so its readable-brain fog ,migraine brain is real right now,
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MigraineGirl
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I think the first port of call should be to your doctor to get your meds reviewed. If you don't have much confidence in him, see another in the practice. Perhaps you might need further tests like an MRI to find out what is going on.
Next, I would make an appointment with the Citizens Advice, they are incredibly helpful and know what they are doing.
Thank you! I haven't seen my neurologist in over a year, he said i was a tough case because 99% of things that help others keep they're migraines under control doesn't help me...also the last appointment was a day before my grandfathers funeral and his response to the stress of loosing him making me ill was 'oh well' ... my GP is a life saver i honestly don't trust anyone but him, i saw a Locum doc an hour ago and he gave me Gabapentin and Amitriptyline to try and help this flare up- both of which i tried for my migraines years ago.
I went to citizens advice when i first applied, the women who tried to help was an angel, its just a case of fighting dodgy people who's only motive is kicking people out of support group.
Hi there migrainegirl. I have just read your post and I can do so relate to all of this. I have M.E and fibromyalgia along with polycystic ovary syndrome. As for the migraines I totally sympathise with you they are just bloody awful arnt they. Excuse the language. Where roughly do u come from? I'm in surrey near godalming. I totally have had bad migraines for 2 years that started off like yourself with funny fainting episodes. I was referred to a neurologist and then to St. George's in tooting who want to infect me with a drug of naproxen as I can't take it orally due to an op I had a few years ago.
I so feel for you as I've been unwell since 2005 with first diagnoses of m.e. I'm going to be referred to a immunologist as I've had lots of throats infections etc also. They know that I'm fighting stuff but since last summer I was diagnosed with the fibro too and like u I find it all just to unbearable sometimes. I feel for you as I'm not 37 so had it a long time and you are young also.
I've lost friends and had broken relationships I never thought I would because of being unwell but in my eyes it proves who truly does care when ur ill. I'd like to say if u need a chat or anything I'm here. I today am having a pain and slow day and am terribly itching I'm actually tucked up in bed as I had a terrible night. But what I'd like to say is ur not alone. I had felt it for such a long time and at times I still do but knowing I can't have a rant on here or read others posts is truly great. I'd like to meet some friends in the surrey area or any area. Please keep smiling and message anytime.
Hi Twinkle0411, Thank you so much, reading this got me a little emotional... im from South Wales, can i ask how you were diagnosed with M.E. dr's around here don't even think of it as an option,i only got diagnosed with Fibromyalgia during my first severe flare up because my favorite GP actually spent time studying it a few years ago and picked up on the symptoms and gave me pain meds straight away, migraines are actually the devil, i've just recently turned 20 and iv suffered since i was 8-with only a slight gap between 8-10.... my neurologist is a horrible man,i tried 2 rounds of botox which failed and ended up being treated for anemia and a stomach bleed because he'd given me 750mg naproxen with nothing to help protect my stomach...
I've just come back from an appointment with a locum GP, he's given me Amitriptyline and Gabapentin to try and control this flare up and wants me to be sent to a fibromyalgia specialist.
It's true, ive come to the conclusion it doesn't matter how well you know someone before an illness takes over you'll never know the person they'll become when you aren't who you used to be, luckily i met my two best friends 4 years ago just as i was getting super ill and they've stuck by me and supported me through it all,they're two of the people who actually know how bad it can get...
Thank you so much! same to you, i hope you feel better soon.. xx
Ohmigosh how bad can it get!! I'm so very sorry for what you've been going through!! How tough it has been for you! How tough and capable you must have become to meet all of these challenges! Of course you've had increased depression and anxiety, who wouldn't? Those are natural responses to what you've been going through.
You need to address taking an antidepressant with your doctor, probably one for both your depression and anxiety. Also you need a therapist for all of your many needs and the complicated aspects of your treatment. This therapist may just be the one part of your life that keeps you sane. A person in your corner taking a look at the craziness that's your life and putting a balanced perspective over it all.
I've been through similar times like you describe and I admire you for getting through such tough times and doing what has to be done. I know just how hard it is to plow through these tough times, especially when you yourself aren't feeling very good and are battling your own health problems. Kudos to you!
Thank you so much! i actually had to double check this was commented on my page
I don't feel strong or capable to be honest its more of a matter of i don't have a choice but to deal with these illnesses no matter how bad they decide to get, my GP actually said that the benefit system and how they're treating me is a major trigger for my illness's and depression and anxiety, i've been given Fluoxetine but im not sure whether i should take them because of the side affects i've been warned about.. I did talk to my dr about seeing someone to talk to but then i was sent a letter for group counseling which is an enviroment im mentally unable to deal with-speaking to one stranger is enough.
Thank you so much again! hope everything stays healthy and safe for you!
I found fluoxetine to be the gold standard it's reputed to be, with almost no side effects. I took it for about 12 years one time and did another 6 year stint on it after a few years' vacation away from it. It was the best antidepressant I ever took with the least side effects for me. I can only think of 1 side effect that it had, but maybe I'm not remembering another 1 or 2? They weren't significant compared to how great I felt. I know we're all different in how we react to each med but I can only tell you about my experience. Best of health to you in whatever you decide!
Hello, I'm so sorry you are having such a tough time.
I'm a chronic migraineur with fibro too and going through the PIP appeal process. Like you, my fibro symptoms have escalated beyond what I have experienced before as I am so stressed, it is quite scary, but try to see this as a flare up perhaps as I'm sure when things settle down, our illnesses will settle down a little too. It's also hard to try to work on feeling better whilst this is all going on.
I spoke to the Brain Charity for advice on how to deal with DWP over PIP, they are very helpful and supportive. I understand that this Organisation, FA UK, also offer benefit advice. It's worth finding out if there is a welfare rights officer in your area who, if you are going to go to tribunal, will help you prepare and perhaps also attend with you. Sometimes they operate out of Social Services, sometimes independent charities.
I was told that Chronic migraine (and epilepsy) sufferers are currently faring very badly within the PIP process and I suspect fibro is not much better, so the more help you can get the better.
Hi, aw im sorry, i know exactly what your going through, this is my second time fighting it, the first went through tribunals and appeals leading to a final apologie of the judge and being put in support group - they have no problem lying about you and your answers so make sure you photocopy everything so you have proof... 2 years later im back fighting them because they put me in the category of "will get better" which shows the ignorance to our conditions...
Thank you i'll definitely look into them, yes that's true, but you have to remember that giving up and letting them win isn't an option and are illnesses and medical evidence proves we are ill and should be left alone.
Here's what the World Health Organisation say about severe migraine, taken from the Migraine Trust site:
'Severe migraine attacks are classified by the World Health Organization as among the most disabling illnesses, comparable to dementia, quadriplegia and active psychosis'.
It's funny how the DWP seem blind to this, even when you have daily attacks.
Fight the good fight.
Gentle hugs and wishing you some better brain hours.
Hi migraine girl, I have had chronic migraines for years so I understand how overwhelming it can be, especially dealing with the worry and anxiety of court etc. I think the best thing you could do for yourself right now is try to relax. Use your reinstated pip money to Go for a massage. Heated stone massage is the most effective on my fibro bod. Explain your body to therapist so they know how to massage you. Try deep, slow breathing in thru the nose and out threw the mouth. Look up mindful meditation it is now recorded by nhs it is so useful. Just do anything that will give you enjoyment and make you feel a little better. All your energy has been spent on other people and things for quite some time you now need to focus it on yourself All the best
Thank you! i've suffered for nearly 12years, fibro nearly as long but only diagnosed a year ago... this is my second time fighting, the first time took 8 months,appeals,tribunals , the put me in support group but turns out i was put in the category to be reviewed becaused they assumed i'd "get better" in the last two years, which shows their ignorance to the conditions.
i'll definitely try them out, i've had the bowen method massage done before, which was amazing due to the lightness of the whole massage/adjustment process- and helps realign areas of the body and release toxins.
I have been having bowen treatment for years, it has really helped me deal with the fibro and especially the pain, I often need realigning! I have been through the court process three times for dla and then pip, one time even the court process was annulled and I had to go through it again with new doctor and lawyer as the original lawyer broke their own rules. It was horrendous so I know how rung out you must be feeling now.all the best
Great advice , mindfulness and relaxation techniques are definitely the way to go, I've got rid of lots of meds in favour of trying something different like meditation . The apps you can download such as Calm and Zen, to name but a few, are really very helpful,. I used to poo poo all that sort of stuff, now I look forward to ten minutes before I go to sleep just unwinding, certainly helps to slow breathing down...and really relaxing the whole body,,
I am so truly sorry to read of how you and your mum have been suffering and struggling, and I sincerely hope that you both can turn a corner soon. I have pasted below a link to the FMA UK benefit adviser (Janet) who may be able to help with you benefit problems.
I also suffer with the most awful migraines, and because they have several origins it is always best (in my personal opinion) to try and discover the cause. A trip to the opticians may prove useful? As well as a new appointment with your Neurologist.
I want to sincerely wish you all the best of luck my friend, and please take care of yourself.
Come of naproxen one of the side effects is sensitivity to bright lights, I now have an eye condition called blepharospasm which has made me very sensitive to bright lights and now have to have botox injections in both upper and lower eye lid's every two months to keep it under control.
Hello Migraine Girl. I think you have too much to stress you. Can you find an advocate to help sort out your benefits? CAB or other charity? You must have financial security.
Ask your Dr to review your meds?
I'm sorry you are suffering like this and you are so young still. This really needs sorting. Quickly.
I'm sure you want to support your mum and it must be horrid feeling so poorly when she needs you.
I sometimes self talk myself. I have to watch with the kicking bit though. I'll lose my balance! Oops! No, I just know I can be mean to me when I'd be gentle with others so now I know I need to treat myself better.
Can you drink water? Maybe a squirt of lemon for flavour? Keep drinks simple.
I was very young when fibro hit. It started with my Tummy.
I'm now much older and I'm slowly getting to the bottom of things. That is a whole lot of denial and drift and suffering in-between.
When I mentioned about the stress. That is not to imply at all, that your condition isn't real, just It stops you coping with what you have and drives more pain. Esp. headaches.
I spent years fobbed off. I had stress didn't I? All the alternative treatments were hokum too. I tried each one and failed.
Finally I'm healing my tummy. After so many years sick, it's a long haul.
Omeprazole and all the other meds, were useless or just sticking plasters to cope at all.
Beware too the tummy meds that are blocking the uptake of nutrients. I now have weaker bones because of it. The meds to treat this make me ill.
My tummy went From tummy aches to IBS to indigestion to Gastroparesis and then things were very bad indeed. I was malnourished and entirely unable to deal with stress. I read in despair at the tales of people unable to eat and on feeding tubes to survive. I started to panic. I needed a cure not another condition with no understanding or cure.
I decided to ask my body what was wrong. It said what it always has. It is being poisoned. Not very helpful. I did lots of reading and thinking and then had my epiphany.
We need bugs in our tummies to digest our food and get the nutrients. The bugs are not optional but essential. I figured I might have killed my bug family having taken many rounds of anti-biotics and constantly having tummy issues.
I decided to take proper probiotics. With food. These good bugs like veg and fruit and fibre. The very things I couldn't eat. The poor bugs tried to get a hold in my tummy but were starving, as each day I failed to eat the foods they needed. The pain was too much and I couldn't get them down. I was frightened too to eat.
It has been a massive journey. Getting it right. Enough fibre for the bugs, and not too much for my tum. I've had a lot of difficult days when I thought it was a waste of money and hurting me too much when I got the balance of fibre wrong.
Today I'm eating foods I love but had given up on ever having again. I'm fatter, thank goodness because I was sick of people asking if I was anorexic.
I think probiotics will be needed long term. In our world, we grow food with pesticides. The pesticides work by making the pests tummies bloat and explode. It kills them. We are not like these bugs. Human DNA is different. Thus the Pesticides are deemed safe. Our tummies will not bloat, and explode even if it feels like it sometimes!
The problem is that we humans are host to trillions of bugs. Good bugs that live in our digestive system and that we let do all the hard work for us. The theory I favour, based on reading lots, is that these dear bugs, are just as vulnerable (to their tummies exploding) as the ones that threaten to eat a crop in the field. If we are also depleted in bugs because of a bout of DnV, Anti-biotics or maybe ongoing diarrhoea from IBS, or even poor diet, the few bugs left have too much work to do. The pesticide weakens them and likely kills them too. (not us). We then struggle to get our nutrients. All this is also linked with leaky gut and the dreaded brain fog!
B12 is essential for Migraine. If your tummy is crook, you will struggle to digest enough. Always, it seems my migraine friends have tummy issues like me. I take a sublingual B12 supplement to ensure I absorb it. Don't just take my word, read it up! or take professional advice.The research and evidence is there for it's use. Just find out what you need. Ask your GP to test? All our B vitamins are needed in times of stress. Magnesium too is often suggested for both Fibro and migraine. Migraine.com discusses it's use. Likely other sites will give info too. You have to find what is right for you.
When we are poorly, we need an excellent diet and supplements too. Tricky if your money is lacking.
I don't know if I'm writing out of turn and if I am, ignore me, or may I'll be censored for dabbling. But I know people are really suffering and our Drs simply don't have all the answers for us yet. I've wasted so many years and done so much damage being poorly. Trying to fix my stress when it was so much more. You and others are so young. You ought to have a chance of healing or at least being better than how you are now, suffering so badly and feeling so hopeless and blocked in. I fear the longer we wait, the more damage is done and any healing will take much longer.
As we sicken I think we get problem on problem. Would I always have had Fibro? I don't know. I know it has gotten worse and worse even though I was told and believed, it wasn't progressive. I think nutrition and digestion is a major key to how the body weakens. Every system is affected.
We each are the trail blazers searching for our cure. When we share we can build on the knowledge and failings of those who have gone before us. Hopefully reaching out to this forum is you first step on your path to positive healing. There are lots of lovely kind souls wanting to help or just understand and be here for you.
Bless you love you've got a lot to cope with.😔 On the migraine point, I take Maxelt Melts wafers,
They are a single dose tablet that u put under the tongue at the first sign of headache starting. They are very very effective.. think other name for them offhand is Riatzipan(not sue of spelling) I've suffered a long time with migraine, stress is massive trigger .. I had to stop co codamol as they're a killer on the gut,.ive recently been diagnosed with IBS which symptoms include bloatedness , cramps etc, stress and anxiety the cause of that too. Also a thing called Hyperventilation syndrome , symptons include shortness of breath, chest and abdominal pain, palpitations and weight gain, basically dysfunctional breathing. It causes symptoms that mirror serious illness but after all test came back with minor findings, I was still experiencing all the symptoms and chronic fatigue and thought I was going mad, turns out it's all down to not getting the carbon dioxide out through my breath.. it's a very vicious circle as it creates more anxiety waiting for results then still convinced something's wrong and now one taking it seriously.. also left untreated can lead to problems later on .. it's worth looking it up and see if it strikes a cord with you.. also dizziness.. shaky legs and dry mouth . Forgetfulness.. the list is endless really.. good luck anyway.. I feel my battle us half won but still a way to go.. this site has helped me a lot , more info on here than in my docs surgery !!
Hi Migrainegirl. Im sorry to hear you are having such a tough time. I agree with Ken about it being an idea to try to see what may be the trigger for your migraines. Ive had migraines since I was 12 (now 57). I no longer eat chocolate, cheese or drink coffee and just recently have stopped eating large naval oranges as I found these too start a migraine. Also stress can be a factor which it seems you have had a lot of lately. Its hard not to have stress in your life so finding ways of dealing with things is a hard task. I still get migraines but they have decreased. Hormones are another factor I found to be a trigger. I think you should see your GP about the things you've spoken of here first though to rule out other conditions especially as you have been losing consciousness and also ask for your hormones and vitamins to be checked with a blood test especially vitamins D and B12. I don't think you will be able to get magnesium checked but I find magnesium spray good for pain especially just before bed at night. I hope you get some relief from your pain soon. Don't forget we are here to help if we can. Gentle hugs Joolz.x
What a shitty time you are having. Migraine wise I am right with you. Mine are so bad that I cannot function in any way. As I retreat to my cave, I can't contribute or help in any way with my family. As my doctor realised what a gross problem this was he did some research into injections for immediate release. He came up with a zolmitriptan nasal spray,each plastic spray holds one dose and if,if I can get it right at the beginning it helps,doesn't cure but defiantly helps. If you haven't heard of this I hope it helps. And good luck with your our mam,s recovery. Big hug and take care.
Hi there, I also take the nasal spray as tablets do not work, used to self inject til I found out about the spray. As you said can be very effective if you get it at the right time.
It still doesn't really stamp it out tho does it snazzy. Can at least move around though. And the looks I get when I've used them in front of people are worth a laugh ( after)
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fibro flare
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Headache or migraine ?!?
