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

Posted , 3 users are following.

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


1 like, 6 replies

6 Replies

  • Posted


    If you belive in Homoepathy treatment there is a advice for you.

    First of all use "Nux Vomica" in 30th potency, use 5 drops in some water 3 times a day for one week, it will nutralize all the medicines effects.

    Secondly use "Epiphagus" 30th potency, 10 drops in some water 4 times a day it will cure your chronic headache, but you have to take it until your symptoms rectified.

    • Posted

      I don't wholly believe in Homoepathy however the point of my journey & advice given by truly a top spcialists was actually plain & simple - avoid Medication! I didn't not expect him to say that while every other doctor had thrown the harshest of drugs at me from antidepressants, anti convulsants to my own self destruction of over counter meds. It's not to say these medications do not help & given the pain I was in there was no clarity in my choices. There are so many stories of others who have fallen down this slippery slope so Im willing to try your suggestion. Did these treatments help you? 
  • Posted

    what a journey you have had!  The last Dr seemed to be the most helpful so I hope you feel better soon.


    • Posted

      Thank you Richard. Still here to live tell the tale though want my life back. Moral being act cautious when meds are handed out like candy as side effects are more damaging & there is often no rationality when it comes to pain managment. It took 10 costly exhausting months to have 1 man tell me in short 'Go back to back to the drawing board & start again..detox ..then i will help you" ...simple advice but hope others will take that on board before upping their dose.
  • Posted

    Hi Jamie, sorry to hear about your plight, may i ask how much Gabapentin you're taking? I suffer with extreme headaches myself and was just interested about your medication on 'pain signal blockers'.
    • Posted

      Hi Nick,

      To be honest I never took the dose doctors advised & have no regrets though admittedly the down side is im never always pain free. I researched headache medication until I was able to have an educated conversation with doctors instead of them sending me home with prescriptions. Pain medication will block the signals but your quickly forget your symtoms which in my case I feel is nesscary. It may sound a little crazy but as I allow myself to feel pain so I can be clear to pinpointing where? When? etc I keep a diary & as my post said the specailist was in agreement to keep medication at a low until all possible causes are ruled out. Once the meds mask the symtoms you will just need higher doses as your body adjusts until like many you could be on full dose & mulitple meds. Coming off it is a nightmare and symtoms usually come back. To answer your question I take 200mg Gabapentine (300mg starting dose) but my choice is to keep connected to my body even if i have hard times until I have I tried & ruled out everything. Happy to help if you have anymore questions. 

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.