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Posted By : Claireyjsy - 1/23/2013 2:54 PM
I have suffered with daily headaches for the past 15 years. In the earlier days I struggled to lift my head of the pillow in the morning without experiencing cronic pain. Now a days I wake up with a headache which gets progressively worse throughout the day. The headache is frontal, and appears to originate from behind my eyes, in my temples down the bridge of my nose leading down to my jaw. I also wake up in the morning with a stuffy nose. I have taken various medications, had wisdom teeth removed, visited a chiropractor, had acupuncture, seen osteopath and even a faith healer.
My sinuses were checked in 2002 and they were clear. For years the only diagnosis I have received is that they are tension headaches. Recently I have visited a neurologist who has diagnosed cronic migraine and the possiblity of low CSf pressure or brain sagging. I had am MRI scan which was inconclusive and was informed that MRI only showed leaks in 80% of cases. I then had three session of iv caffeine 3 weeks apart but this was ineffective. The neurologist has now suggested a course of epidural blood patching or intercranial pressure monitoring, which is an extremely invasive procedure and when I look at the fact that my MRI scan was clear I don't feel I want to put myself through this. Has anyone had intercranial monitoring or blood patches?

For the treatment of cronic migrane the dr has suggested triptans but thinks I should find out once and for all if there is a pressure problem before I just treat it as migrane. I am really nervous about this and want to exhaust all other options before I commit to this. Does anyone have any suggestions as to what I could try next .please please please help. I feel that as I have suffered for so long people don't realise what I go through on a daily basis.

Thank you

Posted By : tmjpain - 1/23/2013 5:32 PM
Hi Claire
Sorry to hear of your long journey with headaches. I have had constant severe headaches for thirteen year. Also in both temples. I too have tried all kinds of meds, treatments, doctors, specialists, etc.
Your neurologist could do a lumbar puncture and that will tell if you have low pressure before going ahead with the more invasive treatments.
I am now awaiting a surgery date to get an occipital nerve stimulator. You can google this for more info on it. You could ask your neurologist for a referral to a neurosurgeon to be assessed to see if you are a candidate for this. Where do you live? this surgery is done in many states. Also if you are interested I can hook you up with a facebook group of people who have had the surgery or are in the process of getting the stimulator. Let me know.
Have you tried any pain meds? chiropractic? massage? orthodontist to rule out tmj disorder? pain management dr? nerve blocks?
 
Keep posting. I would also suggest you come to the chronic pain forum. This forum is very active with a lot of support and a wealth of knowledge. That is where i always post, so hope to see you there.
 
Take care
Suzane

Posted By : Claireyjsy - 1/24/2013 1:44 PM
Hi Suzane

Thank you for your reply. My neurologist doesn't believe that the lumbar puncture test gives a true result as it only measure it at a particular moment in time and could cause more problems and may not show significant result. Maybe I should just insist that I want this first.

I have seen a dentist for tmj and had a tanner splint made which didn't make any difference. I have also tried chiropractic and deep tissue massage.

I am based in the UK and am currently researching any other alternative therapies.

Thank you for referring me to the cronic pain forum I will have a look and post on there. I will also look into the occipital nerve centre.

I wish you the best of luck for your surgery and I hope it works for you. I look forward to hearing how it goes.

Thank you

Posted By : TechSpec - 2/3/2013 5:09 PM
Sorry to hear of your chronic migraine. There is growing evidence that migraines are like a type of allergic disease. A study on chronic migraines in children showed that 93% of patients could stop their frequent severe migraines on an elimination diet (see first reference). For the first week of the study, the patients ate only 4 foods (ex: rice, lamb, apples, and brassica). If that helped reduce their migraines, they added foods back once a week until their diet was nutritious and socially acceptable. This was done under the guidance of a dietician or physician. Similar results have been demonstrated in adult patient populations (see second reference). It may be worth a try. You may also want to reduce exposure to environmental allergies (use hypoallergenic pillows, hypoallergenic mattress cover, remove dusty rugs in the bedroom, etc.) An allergist could give you a simple prick test to find environmental allergies, although these tests don't work well for detecting food allergies (see reference 1).

I had a chronic migraine aura for about 2 years and learned that my diet was by far the best way to manage my migraines. I tried an elimination diet. I cut out 7 common allergens from my diet (Milk, Egg, Wheat, Tomato, Beef, Corn, Soy) and got much better. I now eat mainly rice, vegetables, and fish and have almost no migraines.


Best,
Steven

References:

Egger, J., et al. "Is migraine food allergy?: a double-blind controlled trial of oligoantigenic diet treatment." The Lancet (1983): 865-869.

Mansfield, Lyndon E., et al. "Food allergy and adult migraine: double-blind and mediator confirmation of an allergic etiology." Annals of allergy (1985): 126.

Monro, Jean, Claudio Carini, and Jonathan Brostoff. "Migraine is a food-allergic disease." The Lancet (1984): 719-721.

Posted By : My Lovely - 2/4/2013 3:06 PM
Have you not been offered botox?

Sorry this is short, but struggling on comp at min

x
My lovely Suffers with:

Chronic Daily Migraine with Daily Visual Disturbance
Chronic Fatigue Syndrome/M.E

Posted By : Snowinsummer - 2/10/2013 1:09 PM
I've suffered from migraines since childhood. Common triggers for me are barometric pressure changes, strong solvent type smells, lack of sleep, alcohol, sometimes being over hungry. One thing that really helped was acupuncture; it lessened the frequency and severity of the migraines. The treatment regime was intense at first...daily treatments the first week, then 4 treatments the second week, 3 the next week etc. until I was going once every few months just for a 'tune up'. A good friend was 100% cured of her chronic migraines by going to a acupuncturist who specialized only in migraines.

Another thing to consider is eliminating gluten from your diet. I was recently diagnosed with severe silent GERD and put on pantropazole 40 mg/day. To help control the GERD symptoms, I decided to try a gluten free diet. I haven't had any headaches, including migraines since my GERD diagnosis. I've been attributing this to the medication, but I'm thinking now it's due to eliminating gluten. I'm going to stick with this gluten free diet for a while and see what happens. BTW it seems to be helping with the GERD too!

Posted By : Ian&lisa - 8/6/2014 4:23 PM
Hi becky , so sorry to hear you been in so much pain , I was also a 24/7 migraine sufferer for 3 years and know exactly how you feel . I had everything from mri to mri contrast , Botox , nerve blocks , aquapuncture. Ect ect the list goes on ,. Anyway to save boring you with all the horrid stuff I finally found something that gave me releif and was like a miracle , its a device called Cefaly its amazing I have it on my head right now seriously lol, I got mine from a website migraineheadacherelief and they delivered it next day and that was that, it was expensive at around £300 but its mine for life and their are 0 side effects so I can use it as much as I like its great. I hope your not still suffering but if you are you should definitely get this device it has over 71% chance of helping relief the pain a little to completely .

Posted By : Amanda14 - 3/24/2017 8:45 AM
Sorry to hear about your chronic migraines. I too have had migraines for about 15 years. Im 37 now. I dont like pill popping but after so many years of pain, and so many dr visits, i decided to try Topamax or should i say dope-a-max. It was horrible. I had so many side effects. Numbness, still had headaches, depressed, tired (zombie like). So i went off that and just went back to Excedrin. Again after a couple more yrs of pain i finally decided i would try someting else. So the specialist suggested
Nortriptyline. So i have been on it now for 2 weeks only 10mg at night. It has been a god send. I haven't had a migraine in 2 weeks. I've no side effects other than dry throat. I recommend this. It also helps with IBS conditions too.

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