A Long Story for a Long headache - advice to give - advice needed.

Im posting firstly with empathy for those suffering chronic headaches amoung other symtoms & medication side effects which go hand in hand. The secound reason is having been fortunate to have seen top nuerologist - nerve speciliasts & dentists. No stone left unturned within my 10 month ongoing nightmare but like you giving up is not an option. I hope my story can help others while maybe you can help me?

CH are triggered off by a number of reasons so wether the cause is relevant will depend on tests results. In my case severe left sided headaches started 48 hrs after root canal but there were others factors surrounding the week in question such as life style, stress/1st ever panic attack due to the severity of the headaches which were new being a perfectly healthy 37year old girl. 

The 1st neurologist shook my hand "good news, your MRI, CT, Lumbar puncture & blood tests are all clear". I didn't share his joy having no answer or cure while stress & 2nd panic attack followed with continued stabbing/throbbing tension type headaches.

The 2nd nuerologist sat me down, "Good news, 2nd MRI with blue dye run through my body, CT scan, Blood tests are all clear but there are signs of muscles spams in your neck - 6 weeks of physiotherpay & prescription of pills (antidepressants - amitiplyine & Naproxen will break the daily headache cycle". I wasnt convinced but did as I was told completing physio & acupuncture with no real results.

Within a week of taking these medications my mood became sucidial low with uncontrollable tears & anger. The nightmares were intense. I stopped eating. Numbness/pins & needles took over the left side of my body, sleep deperived & stressed severe heart palpations started. The stress triggered screeching deafening tone in my left ear which appears to be permament & fluctuates in tone depending on the strength of headache.

My GP switched me immediatley to an antidepressant 'Nortriplyline', the same family of pain managememt medication but the side effects were torable depending what one can tolerate?. I became heavily consitpated, no libido, weight gain, insomnia/nightmares & new symtoms developed 'TMD' (Jaw inflammtion/clenching). As long I wasnt slitting my wrists I was grateful for some pain relief but found anything above 10mg (normal dose 25mg) would trigger numbness, tounge swelling & increased general side effects so combined my meds with over the counter pain killers which helped.

My nuerologist becoming increasingly annoyed by me insisting such extreme side effects could only be in my head since all my results were clear, meds were a low dose & most likely suffering from depression. I left in tears feeling as if I couldn't maintain my relationship - support & understanding is so important! Im grateful he is still standing by me.

Days later I pulled all my medical notes from the nureologist. Don't be afraid to go with gut feeling. I found a new GP who quickly diagnosed it as Nuraligia/Nerve damage, mostly likely caused by an injury & trigger from the root canal made worse by medications & stress. His first line of treatment offered was Carbapazipine which i was cautious to try due to side effects (was told to stop reading horror stories on the internet but in this case ignorance is not always bliss) Agreed to try Gabapentine which intially helped me with some side effects which passed quickly as I remained on a low dose continuing to combine pain killers.

The GP gave me confidence to go back to my dentist explaining my situation since the procedure, intially he fobbed me off but I insisted on a referral to a specialised dental hospital. They confirmed TMD believeing the headaches may have been triggered by trauma to the Jaw during the intense 3 hour procedure which I was advised against (always do it in stages). The xrays showed no damage, infection & well performed root canal however physical tests showed extreme sensitivty yet there was no nerve? Keep the tooth or extract it against dentist's advice?

Weeks later my health went down hill fast as i suffered intesfied headaches, numbness, burning on the soles of my feet, extreme short of breath, unable to walk a meter to the toilet, the pain was agnosing. I had rushed myself 3x to emergency, the panic attacks became frequent, every 6-8hours till I refused to leave the house. The hospital sent me home each time dosing me up on Xnanx & diazpam for 2 weeks until I didn't know what day of the week it was. Literally everyone became unsympathic & bored by the drama including my parents, so took it upon myself to search the internet & ask a handful of top private hospitals to find a specialist who could help. The waiting list was long even for private health care but I was deteremined to hold on to see the right person. 

3rd Nuerologist/Nerve specialist who I had waited several weeks was unable to make it through the consultation, instead had me rushed to hospital, within 45 min I had camera up one end & down the other. My stomach was bleeding from over medicating & 2 stomach ulcers, acid filling my lungs, unable to breath, my insides inflammed. It was a definate low point lying in hositpal feeling sedated, 18 pounds over weight, my body failing me, all within 10 months.

Upon recovery I thanked the specialist for acting accordingly. He arranged an EMG/Nerve conducation test and set up a consultation). With results in hand. This was his advice:

"ALL results are clear. What we do know is you have 'Chronic Headache', 'Stomach Ulcers' & "Anxiety'. Prior to this you were healthy.  Anixety/Panic attacks are triggered by headaches so there are no mental health issues or depression. Any doctor that diagnoses you with 'Nuraligia' means they have no idea whats wrong with you therefore its as is, a chronic daily headache. Stomach ulcers have been caused by over medication.  You take an average 4 nurofen/paracetmol daily x 7 = approx 28/30 pills a week, 1 month = 120 pills x 10 months = average 1000+ pills! The process to recovery is dealt with in stages. You will never receover if you do not get through the 1st stage of detoxing your body from pain killers. Here is a headache diary. I want a record of every pill you take. Slightly increase the Gabapentine which purley works at blocking pain signals which will help keep you off pain killers but it won't be easy, the first 10/14 days will be the hardest but do not take them. Instead drink 2L water daily, 400mg Ribo B2, 600mg Lipho Alpha Acid & pro biotics. Once your blood is clear of over counter meds then we reduce Gabapaentine with the goal to get you off all medication as they often cause the problems. Once at that stage we take it from there. Regarding the tooth, though not a dentist, extract it, bridge it & rule it out as it will only play on your mind as being a possible cause."

Im going to follow his advice and hope this encourages others, its been 10 days now & had some hard times but staying positive & will keep you posted.

p.s. I gave up smoking / No alcohol

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