new here

[blueuy]

I am new here, I have suffered from migraines since I was 6 years old, i am clinically depressed, have panic and anxiety disorder and on antdepresnts and see a therapist yet feel that no one really understands that my problem is chronic an dehabiliating pain that is in my head but not "all in my head" as i have been told by many! i went to the ER last week because i thought iw as having a stroke! a my migraines seem to be getting worse i could not keep a single sip of water down , 2 days ago i had another and at the peak of my pain looked for ways to end my life... because i felt that i could not bear it anymore... i often have to cancel therapy and medical apointmnets and been told i have avoidant discorder, etc etc and i try to explain that i have a migraine... well, they sa, so y you have a headache but you have to keep ure appointmnets! but i cant i cant because the pain sometimes has me in a ball wanting to die at times and i am distraught....feel misunderstood and alone

[babs1234]

Has anyone ever mentioned cluster headaches to you. Google it and see if you think you key have them. 💕

[better_world]

Hi blueuy,

You have done the right thing in joining the forum and telling your story. It is important to know you are not alone.

Worldwide, the statistics show that the actual number of migraine sufferers are probably 50% higher than the accepted number because of migraineurs "Suffering in Silence".

"Suffering in Silence" means that they kept their pain to themselves because family, friends, doctors, no one seems to believe the pain they are in. In this forum you are with people who understand pain!

My youngest sister at age 18, who was developing chronic migraines, that is a migraine every other day, was referred to a Psychiatrist, as the family doctor told my mother that the pain in her head was all imaginary. Absolutely disgusting!

I have known people who literally were prisoners in their own home by their chronic pain and often wondered at the strength it must take to face everyday.

Because of the pain, excessive medication can lead to its own problems by causing rebound headaches. It is incrediably difficult to try and wean yourself of your meds for 30 days to see if that helps break the cycle. The other thing is magnesium, but not just any sort of magnesium. Studies by NY University showed chronic migraine sufferers were highly deficient in magnesium. Certain types of magnesium, mainly magnesium aspartate and magnesium gluconate can actually make migraines worse. Dr Carolyn Dean wrote the book 'The Magnesium Miracle' and she says the only effective form is magnesium chloride, which is a liquid.

So, my 2 bobs worth of advice is, start by taking a magnesium chloride supplement everyday. I personally take a teaspoon a day and the improvement in my sleep, less stress and clearing of brain fog after a week were staggering, compared to taking a tablet form of magnesium for years. realise they were an absolute waste of money.

All the best and realise you have a family here that you can always talk to when feeling blue.

[Cat00]

I had the same problem as you. I have chronic migraines, fibromyalgia, insomnia, anxiety which developed into a state of constant panic that lasted 2 years and let me at 5 and half stone. I had been in therapy in mental health services since I was 18. I had gone to boarding school for 6 years and it traumatised me, especially since no one believed I was ill so I just kept been given punishments for being crap at everything when in reality I was just falling apart. It took another 6 years to get proper recognition and treatment for my migraines. I was told there was no treatment for my other conditions.

When I was in therapy I was in groups of people with serious addictions to self harm and they formed attachments/obsessions to staff. I never self harmed I was in too much pain to deliberately cause myself more, I didn't feel particularly inspired by staff. Like you said no one seemed to be able to imagine chronic pain and what that does to your mind. Despite being in what was tertiary care i.e the highest need level they were completely unable to treat me, my social phobia and anxiety, my pain.

The only thing that did help was a 'living with pain' course I did at the local buddhist centre, although it wasn't buddhist rather buddhist inspired. I didn't think it helped at the time but I came to realise later that it had changed my attitude towards my pain and that I started to fight it less and accept it more, but as I say this happened later.

The NHS seems incapable of treating people holistically. I gave up on therapy in the end, they were useless when I was at my worst and I would never have been put in a ward bc it was too much like school. I had therapy for about 10 years or more, I moved a lot so it kept changing. The one respect where I am different from you is I would go to great lengths to not miss appointments, I fought for years to get treatment, I couldn't have done this without my mother early on and my husband later though. I fought for years to get Botox, it was only after NICE guidance changed their stance that I finally got it. I wouldn't go to the ER I know there is nothing they can do. Sorry for the essay!

I hope you get a break from your pain I know how all consuming it is.

[blueuy]

thank you cat00. I feel completely misunderstood all the time, but already finding on this forum that I am not alone...

[Cat00 in reply to blueuy]

It's funny bc I'd never met anyone with chronic migraines until I found this forum. It's been a few years now and I realize I've still never met anyone with chronic migraines in the flesh but knowing they are here on this forum has finally stopped me from just thinking I must be crazy.

[Calm_mama]

Hi blueuy,

Big hugs to you.

Migraine pain is very, very real. And yes, migraines feed anxiety (when will I get another one? What if it's worse? What if it doesn't go away quickly? etc etc) and anxiety feeds migraines (a sensitized nervous system is more sensitive to pain and feeds the pain cycle) However, anxiety doesn't exactly cause the pain of a true migraine. Migraine is a very complex neurological issue and the pain is intense and of course very real.

I'm not sure where you are in your journey, but maybe we can help you. So my questions for you are:

- How long have you had migraines and have you been officially diagnosed?

- Do you see a neurologist or headache specialist?

-How often are you getting a migraine and how long does it last?

- Do you keep a headache diary?

- Are you on a preventive med?

- What treatments have you tried, and which helped, which didn't? Include everything- supplements, pharmaceutical and non-pharmaceutical like acupuncture, getting new glasses, TMS, osteopathy etc

- Is your therapist well-versed in anxiety and how to treat? Does he/she incorporate cognitive behavioral therapy into his/her approach?

Migraines can be utterly debilitating at times. Yes, it's good to function to the best of your ability even with head pain BUT, with migraine, we all know there are probably days where getting out the front door is too monumental a task.

[blueuy in reply to Calm_mama]

thank you for your repsonse, I appreciate very much people on this forum as they seem so ready to help

.

I am a bit overwhelmed , I have not done much to help my migraines as I have been too discouraged having more than a few drs dismiss my pain and finally I was referred to a neurologist who wants me to go on anticonvulsants

(gabapentin?)but

has not really addressed my migraines... I haven't taken them yet as I am scared and extremely sensitive to medications

I am on an antidepressant, and an anti anxiety medication .Therapy, though, not going very well, unfortunately! long story short I im planning to ask for another therapist , she is often dismissive of how much anxiety and pain I have every day

. she tells me I look just fine!

I get a migraine about

once a week with auras? (I hallucinate, see things like spots) and they last about 3 days .I feel as if I am never well. I am always either about to get a migraine or getting over one! my pain is pretty much every day , but at the peak of my migraines , the pain is unbearable -so painful that I have considered ending my own life

.

these very scary thoughts have been coming more often now during a migraine so I am realizing these "headaches " are much more than headaches and can possibly kill me!

i feel its time to get serious about getting help and starting here ,on this forum, I think

I ve gotten so much great information and support already! so I am hopeful and not ready to give up...

[Calm_mama in reply to blueuy]

Oh one more thing- migraine is a benign condition. It doesn't harm people. It hurts like hell but they are truly considered a benign condition. Go get a neurologist to diagnose you for sure. Then you can put that particular worry to bed

[Calm_mama]

Hi blueuy,

Oh most definitely do not give up! The list of things to try for migraine is endless. I am creating a ppt for my 14-year old daughter (the migraine sufferer) to educate her a little better on her condition, and if you'd like I can send it to you when done. It will take me months to complete as I am so busy lately.

But here are a few things I think are crucial to know/think about/read about:

- People who persevere and are willing to try treatments that come on from every angle are the people who get better. The combination of a variety of things + a basic foundation of self care is usually most helpful, ie the usual, often very helpful supplements: Riboflavin, Melatonin at bedtime, a multivite (I am not big on supplements but for migraine these things are proven to help). Talk to neuro/specialist about these before you start any supplements!! Correct any vitamin deficiencies like Vit D deficiency. Magnesium is very helpful with migraine prevention but a doc should guide you on use for sure. Pedialyte or other sports drinks throughout the day (salt + fluids helps prevent migraines- again, talk to doc) a preventive med like Gabapentin which you've started And willingness to stick it out for a month or 2 before saying nope, need to try a different one, A good abortive med/combo of meds (ie a triptan + NSAID or Triptan + Reglan or compazine or Triptan + NSAID + antihistamine etc etc at onset of headache), diet modification (elimination diets can help people pinpoint what food sensitivities they may have, if any), getting their vision checked and correctred, getting any dental/jaw issues corrected, acupuncture, pressure, osteopath, PT, posture correction, etc.

I don't want to overwhelm you but I DO want to make sure you know that the treatment list is endless, and new treatments are coming out all the time. There's TMS, The Cepahly, CBD oil helps some people, Botox, steroids, Nerve blocks, DHE (requires a hospital admission for 5 days). There's a new class of preventive meds that just came out- the CGRP inhibitors- doing amazing things for some people. Usually given after some other preventives have failed. There is more than hope blueuy! leave no stone unturned and be patient. This is a journey so buckle up for the ride but know that there is so much help out there. Get a good headache/migraine specialist to work with you and start educating/empowering yourself!

This site is good but there are other migraine support sites on FB that are more active. They are generally closed groups and I don't participate so you'll have to search. I'm on a parent migraine support group and these parents have taught me SO MUCH. The more you learn, the more empowered and forward-moving you can be.

Until you get in with a good specialist, maybe consider the following:

- Reduce stress. If there are things going on in your life that simply need to change, be courageous and change them. ie, a relationship that's not good for you, a job you need to move on from, a living situation change, etc.

-you may be interested in my profile where I have my favorite anxiety resources. I am a recovered anxiety sufferer, and I have a teen who is mostly recovered herself. The resources we discovered are fantastic. Dr. Claire Weekes in particular was the anxiety genius, and can help anyone recover from anxiety

-Sounds like a new therapist may be a good idea? Don't settle for anything less than the best, best therapy. It is life-changing.

You're going to be OK. Make sure you're reaching out lots for support, especially on those difficult days that make you want to throw in the towel. Suicide hotlines are there for a reason. People with the most support tend to do well. Online support counts Hugs to you!

[blueuy in reply to Calm_mama]

Thank you ,Calm_mama, you are so wonderful. I have been fee ing just so alone. I am glad I decided to reach out, and know now there are people who really do understand what I am struggling with!

[GcrewDirector]

Manny members of my family suffered for decades from excruciating migraines until a couple of years ago. We learned about the MTHFR gene and began supplementing with a B Vitamin complex containing folate. It’s provided unbelievable results.

[Nataliejaynestevens]

Hi,

I'm so sorry to hear you're suffering so much. This is a really great forum to join, people understand what you're going through and makes you feel like you're not alone!

Have you tried going to the national migraine centre? You can refer yourself and they normally get you an appointment very quickly. They're really friendly and supportive and have lots of advice and different things to try. They also understand that you might not always be able to get to your appointment because of your migraines. They really helped me so I really recommend giving them a try.

I too have had horrible thoughts at my worst stages of migraine but if you have a good group of family and friends to talk to it really helps, youre definitely not alone!

I've been trying a gluten and sugar free diet which seems to be helping and also just started on vitamin B2 100mg and day and then hopefully going up to 400mg which I've heard really helps. I've also just had a daith peircing too and i have my fingers crossed for that! Theres so many things to try and see what works for you. Dont give up!

Sending hugs

Natalie