I have been suffering with 24/7 headache or migraine for last 4 years. MRI, xray and bloodwork normal. Developed mild horners syndrome since onset of headache. Diagnosed with variant migraine. Tried triptans, painkillers, muscle relaxers and preventatives. Most recently flunarizine. To no avail! Tried occipital nerve block which also didn’t work.
Headache appears to start in right occipital region. Experience neck and shoulder pain. Very photophobic and mentally cloudy! Also get regular blisters on my tongue. Lost my appetite and fail to sleep properly even though I’m tired. Frequent pins and needles in my hands especially when lying down. Low blood pressure.
Botox is an option but WHAT NEXT?? I’m at the end of my tether. Any help would be appreciated. Nick.
Imaging studies and blood tests usually do come back “normal” in patients with headache disorders.
What you need before anything else is an accurate and specific diagnosis. Horner’s Syndrome isn’t a disease or disorder in and of itself. It’s a sign of another health issue. As far as headache disorders go, the symptoms of Horner’s can also occur with Migraine or cluster headaches. “Migraine variant” is not a standard diagnosis, and it tells us very little. In the world of “headache medicine,” the standard for diagnosis is the International Headache Society’s International Classification of Headache Disorders (ICHD). Here’s a listing of the types of Migraine recognized in the ICHD:
1.1 Migraine without aura
1.2 Migraine with aura
1.2.1 Typical aura with migraine headache
1.2.2 Typical aura with non-migraine headache
1.2.3 Typical aura without headache
1.2.4 Familial hemiplegic migraine (FHM)
1.2.5 Sporadic hemiplegic migraine
1.2.6 Basilar-type migraine
1.3 Childhood periodic syndromes that are commonly precursors of migraine
1.3.1 Cyclical vomiting
1.3.2 Abdominal migraine
1.3.3 Benign paroxysmal vertigo of childhood
1.4 Retinal migraine
1.5 Complications of migraine
1.5.1 Chronic migraine
1.5.2 Status migrainosus
1.5.3 Persistent aura without infarction
1.5.4 Migrainous infarction
1.5.5 Migraine-triggered seizures
1.6 Probable migraine
1.6.1 Probable migraine without aura
1.6.2 Probable migraine with aura
1.6.5 Probable chronic migraine
If your current doctor isn’t able to pinpoint a diagnosis for you, it may well be time to consult a Migraine and headache specialist. It’s important to note that neurologists aren’t necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What’s So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists. You can also find Migraine and Headache doctors through www.achenet.org.
Tie a knot in the end of your tether and hang on, Nick. There are many, many options for Migraine prevention. In fact, there are now over 100 medications and supplements that can be used for Migraine and headache prevention. The frustration of trying to find what works for us can make it seem as if we’ve tried it all, but with so many possible preventives, it would take over 25 years to give each of them a fair trial. See Migraine preventive medications - too many options to give up! for more information.
John Claude Krusz and Teri Robert
If you need help finding a Migraine and headache specialist,
visit our listing of Patient Recommended Specialists.
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