Diagnostic help and ideas needed - head pain 24/7

[Tony Only]

Today we had a young girl arrive our finnish Facebook group, she has had some form of head pain most of her life but has associated it to hereditary condition she also has. Now she is beginning to think the head pain might be something else. I believe it will be very, very difficult to a) find a doctor that is able to spend the time required with her and sort out different things going on pain-wise and b) if such doctor is found to have possibility to go through the required tests. I'm thinking asking around in patient communities, in here for an example because cluster communities are so knowledgeful. We already found someone who has CH and EDS which is amazing. I did a Google translate on her message and will attach it below. The english is pretty bad but I hope you can understand the important parts. Any ideas are most welcome and if someone has thoughts where to ask diagnostic ideas online that would be great. I was thinking of asking about it from Brian McGeeney via Facebook but can't decide is it too intrusive.

---translated message begins---

Basics: My father has the joint hypermobility form of Ehlers-danlons syndrome, which is connective tissue disease. The disease is strongly hereditary and I have all the symptoms that meet the criteria of the disease. However, I have not been diagnosed because the illness is poorly known in Finland. That is why I also have no contact for doctor or treatment. However, my worst symptom is a chronic headache, which I have always thought to be linked to Ehlers-danlons, because it is a common symptom. (so I have a lot of other symptoms, but now I just focus on that headache) But I was thinking of trying a different approach if this is something else. 

My headache began irregular as a child and has increased with age. I am now 18 years old, my worst symptoms began when I was 9 but I have had symptoms before that as well. Now for 2 years I have had a 24/7 headache and no day has been without pain. The pain is, however, undulating (stronger / milder) and varies daily, but on a scale of 1 to 10, the pain is an average of 6. The sore focuses most on the forehead. But it also often feels strongly at the top of the backbone, which I also occasionally get electric-like pain or pain attacks. These electric-haired pains will also come to the forefront, ie they do not focus on one spot. And it seems like a feeling of pain is ready to make me unconscious / knock me out. I have no auras or light / smell / sound sensitivity. Clearly I attach a strong dizziness to my headache (dizziness is more rocking kind) and nausea, as well as fainting. In addition, it seems that the senses would get mixed / weakened, and my balance will deteriorate considerably. Also in heavy pain, there is a blurring of speech and the general difficulty of communicating. On my daily head pain there is also a severe ache on the face (cheekbone and jawbone). There is also a discomfort and pain behind the eyes and that pain feels like "sharp". My eyes may also drain or be very dry. Me feeling sensation is poorer on the right side of my face just as my body is weaker to sense on the right side. My limbs often get numb or feel numb and it is difficult to say whether it is a headache or whether it is caused by EDS. My vision is also weakened by the roughness (I have astigmatism, poor vision), which feels like a gauze in front of the eyes. Pain is usually worse when I am lying down and especially if I am sitting. 

There has been much research, but no explanatory reason for this has been found. All the possible blood tests, the liquid sample, the head and neck muscles MRI have been taken (it should be added that sometimes I asked about the possibility of chiara and then it was said that it was not.) But I just found out yesterday that the borderline diagnosis in Finland is 5mm, .), epilepsy is ruled out neurological examinations have not anything unusual and I have visited ear clinic examinations are not ache due for balance or structural defect. I have tried migraine blockers, meds for migraine attacks, antidepressants, painkillers to resist pain better, regular painkillers, painshots, intravenous analgesics and caffeine pills. None of these have been helpful and most of them actually only exacerbated the pain. At home I have tried everything possible, of course, what I have just been brought to my attention, which would facilitate the pain. 

I've tried to weed out all the stress and stimuli of life away. A year ago, I had to put an end to a day of high school and at the moment I'm in high school online, which does not in any way due to the pain go particularly well. I do not have any more hobbies, but in EDS it is a part of me. I would not be able to live alone at home, and I would not even dare to live alone because I need help from my boyfriend weekly. Often the appearance or meeting of friends requires a lot and the pain is usually worse after the stress the next day. This is no longer humane and I'm going to have the means to go down. Therefore, all information and assistance is now required. Would you recommend a physician specializing in headache? I would also like to especially hear the experience if some have tried botulinitoxin to treat headaches ... 

Thank you so much for having read my long text and wish you all good November!

Edited November 10, 2018 by Tony Only

[Dallas Denny]

Hey Tony

I would definitely say contact Doc B......most down to earth, accessible doc I've ever had the good fortune to meet and get to know!  Over the years I've contacted him on several occasions!!

Dallas Denny 

[spiny]

I agree with Denny. Message Dr. M. Hopefully he has some good ideas for your member.

[Tony Only]

Thanks for the encouragement, so I finally did. It gives a lot of hope that there are doctors like McGeeney available for our community.

I was thinking how great would it be for some ideas to get exchanged between US and finnish doctors. To me it has always seemed that doctors in here, especially in neurology, don't have any kind of source for information what is happening and has been happening in patient communities. For a long time. Cooperation would probably have a huge impact.