Intractable/Refractory Chronic Migraines

Brain and nerves
1

I have been diagnosed by two different neurologists for Intractable/Refractory Chronic Migraines.

My background:

30 female living in United States of America

had migraines since I was 10

did not start period until 12

Since I was a child, I took ibuprofen from 200 mg up to 1,000 plus mg; this drug worked for me up until 2013. I had never seen a neurologist until this year. I sought out last year through my general physican who referred me to one neurologist, but I was not able to because of the job had. (This job complained that I took too many days off for my migraines and seeking doctors.) I stopped seeing this doctor due to the change of insurance.

I stopped working Feb 2015 because the pain became too unbearable. I am the type of person who can tolerate pain, but my migraines did not cease. My pain levels daily level(s) 7-9.

This past April I sought out another general physican who referred me to a pain specialist and neurologist. This neurologist was not available until end of Sept 2015. I went to the original referral neurologist (from last year) and I paid out of pocket.

This neurologist diagnosed me with intractable chronic migraines without aura. She did not help me with any of the pain. She could not find anything wrong with me. She told me that ibuprofen only would worked for children and young adults.

I felt like I was not going anywhere with this neurologist; so I ended up seeing the second neurologist August 2015. This neurologist is my current one, and also has not helped me. I am up for a Botox evaluation in a couple weeks.

I am frustrated because my pain is daily and never ends. I stay in a cold, dark room lying down daily. I have A LOT triggers that I have become a hermit. I was an active person and now nothing.

The tests have all come back with positive results: no tumor, cancer, etc...ONLY migraines...I am glad to not have any fatal disease, but I am not a functioning person.

There is not a medicine that helps...I have tried mediation, physical therapy....nothing works.

Each staff and doctor dismiss me thinking I am capable of anything. It is extremely difficult to explain without being rude or aggressive. I do not know what to do anymore.

I know I am not the only migraine sufferer. I do keep a migraine diary and do my checklist daily to see if I caused a trigger, but I will still have a migraine.

Any suggestions?

My triggers:

light, sound, smell, temperature, and the obivous ones: stress, lack of food/water

Tests I have done:

MRA/MRI for brain

MRI for cervical spine

lumbar puncture

CAT scan for brain

blood tests

urine tests

nerve study

Medicines I have taken:

Tramadol 50 mg, Acetaminophen/Butalbital/Caffeine 50-325-40, Sumatriptan 25mg, Amitriptyline 25mg, Topiramate 25 mg, Nodolor, Buspirone 15mg, Rizatriptan 10 mg, Propranolol 40 mg, Depakote 500mg, Prednisone 20mg, reglan, citalopram 20 mg, sumatriptan 100 mg, Medrol (Pak) 4 mg tablets in a dose pack, Trokendi XR 50 mg capsule, extended release.

Thank you,

Dori

2

Hi Dori

I'm so sorry and I know just how you feel, having a similar history.  I found Epilim gave me a couple of years' respite.  I'm not sure whether there is an equivalent among those you mention.

I now settle for for soluble paracetamol along with a mild sedative.  I keep my head upright and packed round with ice and try to stay as calm and accepting as possible.  I'm learning Spanish so I set up a long-running, learning soundpod to listen to quietly in a dark room if I cannot manage anything else I think, well, some of it may be going in and it feels like I'm at least trying to do something positive. 

I hope you can get some help from the botox.  Let us know how you get on.

Jo

3

Hi Dori, I am sorry to hear you are in such pain.  I have a similar story (am in the UK) and have tried everything and had to retire from the career I loved.  I have now had botox every three months for the past year and it has been transformational, it does not clear the migraines compeltely but they are less freqeunt and less severe, I would strongly recommend it as a treatment.  I also read some academic research about an amino acid  in food called tyramine (lots of info on the net so look it up) being a trigger and it is in  foods I would not have thought of eg olives, avocados.  Avoiding these foods have also helped.  The best of luck. 

4

I decided to see another neuro after my visit yesterday.

I had to ask the current neuro about my lumbar puncture results (This will be the fourth time asking.) The neuro forgot about it and said they did not receive my results yet...this was 3 months ago. I told the neuro the migraine went away and was a lumbar puncture headache, which was strange...The neuro was preparing to send off the forms for Botox when I had to bring it up...again...

The neuro told me that I had chronic depression which was making my migraines more painful. I do not have chronic depression; I haven't been depressed. I get sad sometimes, but I always try to stay positive. He told me I was explaining emotions, not what he was talking about.

Then when I mentioned about this high-pitched ringing/sound I get sometimes and the migraine will get worse. He ignored me, scribbling on his note pad.

I was extremely upset with this visit....He completely ignored my concerns.

I scheduled another appointment with my sister's neuro next month. It is out of town.

I hate this stigma with these doctors. I am thinking of reporting this neuro's behavior to the medical board, but I am not sure if it will be looked at.

5

I am planning on getting the Botox, but with another neuro.

I have heard of tyramine. I am a very picky eater. I looked up the list, and I never eat what was listed. I guess I am lucky on that.

I have noticed the UK has a better support system for migraine sufferers than the USA.

Most of the information I have received were from UK related sites.

6

Hi, I'm in the UK system, have had migraines since six and am now 52.  The NHS has given up on me (in my neurologists own words) and I was refused botox with no proper explanation.  I had to give up paid employment and find my way in the world of the self employed.  I'm sorry to say I have never felt supported by the NHS.

7

Doctors can be so patronising.  I think you have to actually be a migraine sufferer to understand.  A lot of people think we just get a lot of headaches - if only! 

I was once on the way out of a staff meeting, having apologised for being in pain with migraine (why are we always apologising?) when I heard my boss snidely comment "Another hangover!".  I still cannot bear to admit migraines to people I'm not sure of, if it happens to be before noon.

8

Makes sense on your first hand account. I am sorry that you are going through that. What I meant with the "support system" is the information some UK websites offer. When I wrote that last night, I was in a horrible migraine fog. I am sorry about that.

9

I understand and I agree. Even with my family they think I can bounce back to an active life after getting a medicine.

You should not apologize for a disease you have. This is what I hate about the world today judging people based on ignorance. I always try to understand the other person. People are so dehumanized and disconnected now. But I always have hope for the human race! lol

Recently I spoke to this lady from my cell phone company. When she asked how I was doing, I told her, "I could be doing better... I suffer from migraines." Then she goes how on she only had one a couple years ago and that she never wanted to experience it again. She said, "I had two children via natural birth, and I rather go through another child labor than have another migraine."

 

10

I hope you're feeling better today.  I can see what you mean now - I was just indulging in some 'sounding off''.  Anyway, I do appreciate our NHS system on the whole.  At least we don't have to panic about suddenly finding the cash in a crisis and it used to be my employer.

11

Agreed.