5 Year Anniversary of 24/7 Headache :(

By fanghorn

1 min read

Just hit the 5 year anniversary of this lousy state of affairs. Use to get headaches that went away with taking Tylenol but that stopped 5 years ago. Have done the usual regimen of stuff.....acupuncture....massage and physical therapy....4 rounds of botox....Occipital nerve block shots....spenocath.....Nasal endoscopy, lots of different drugs such as Topamax, Imitrex, Nortriptyline etc..., no food triggers found, went off the meds I take for a couple of weeks each with no result, did try 12 extra strength Tylenol one night with no result but a huge scolding from my GP.

Will be trying Zonisamide starting tonight for about a month or so and if that does not do anything they are thinking of trying mexiletine which does not sound very nice.

To say that I am depressed is a bit of an understatement. Having to deal with this thing 24/7 for five years now has not been fun. The pain level is at least always a 3-4 everyday with peaks around 7 and it does seem like the base level has risen a bit the past few years also.

No accidents or falls or anything else within say a one year period of this starting.

So, thoughts anyone?

Thanks
alan

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Nancy Harris Bonk Moderator
Hi alan, Thank you for sharing your story with us. I understand how debilitating and frustrating chronic pain is; I'm sorry you are going through it. Something to keep in mind is it can take up to 90 days before we see a reduction in our migraine frequency and severity when we start new medications. During this time potential side effects may lessen as our body adjusts it. If we don't give each medication a fair trial we'll never know which one would have been "the one" to work. We can get ourselves into trouble if we take pain relievers, and/or migraine medications, whether they are over-the-counter or prescription, more than two to three days a week. This is called rebound or medication overuse headache although there is some conversation about the "correct" name for this. If we are in a rebound cycle, our migraine attacks may be more difficult to treat and we can end up in a daily cycle of pain that too is hard to break. Let me share this information I hope is helpful; <a href='https://migraine.com/living-migraine/stop-rebound-headaches' target='_blank'>https://migraine.com/living-migraine/stop-rebound-headaches/</a>. Another thought is to see a "true" migraine/headache expert. These doctors may be different from neurologists in that they are board certified in headache medicine, which is different than being certified in neurology. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and others. When you get a chance, take a look at this information; <a href='https://migraine.com/blog/how-are-migraine-specialists-different' target='_blank'>http://migraine.com/blog/how-are-migraine-specialists-different/</a> and <a href='https://migraine.com/blog/really-find-headache-specialist' target='_blank'>https://migraine.com/blog/really-find-headache-specialist/</a>. I hope this helps! Nancy
1. fanghorn Member
 Nancy Thanks for the reply....yes, am seeing I guess the foremost authority in the Headache field here in Seattle....I do have cervical dystonia also so the Physiatrist tried some medications at first to weed out the possibility of Parkinson as that is what my dad died from. Then she went to botox with no effect. Will most assuredly look at those links you provided....thanks! Alan
matterofthemind Member
Hi Alan, First I am so sorry that you're going through all of this. I don't know how much help I'll realistically be considering I'm just reaching my 1.5 year anniversary of most of the same symptoms, but considering I've tried a few things you haven't tried (or perhaps your doctors will have a bit more leeway than mine) I thought I'd mention that and procedures I've heard help. I start my days at a high pain level, so my doctor tried prescribing me Venlafaxine for both my mood and my migraines as a double-whammy. For the first few months I didn't notice much of a change other than in my mood, but when I asked to try weaning off of the meds I noticed a huge change in frequency and pain which made us decide to stay on it. It's not to say it's a miracle drug that works for everyone, but maybe it'll help since I know how much the non-ending pain can really attack the emotional parts of you too. I don't know which it helped better (pain or mental health), but it did something and I'm back on a dose of 225mg per day instead of the 375mg I was on. My doctor put me on Flunarizine and propranolol earlier onl, both for blood pressure, they worked fairly well and made me feel better but sent my blood pressure into a bit too crazy a spirál for my doctor. She said it was very uncommon, which is why I mention it to others since they are known to be quite safe. I'm assuming that all your MRIs and CTs were clear from your description, so now that my nerve blocks have started to fail I'm trying to talk on my doctor into getting me a new scan (just in case. As much as they say symptoms don't change, your body changes a lot in five years, it may be a good idea) and possibly checking my spinal column. Aits basically a spinal tap (that's not the right term, but I'm fighting for them right now, I'm sorry) to see if my spinal fluid is under too much pressure and pushing it towards my head. I've heard a lot of crazy success stories about it so I pretty much ran into her office with it and she was much more receptive than other things we have heard about. Again, no idea if any of these will work for you, but I wish you all the best with some of those ideas. If you ever do find out what may have caused the migraine to start, please let us know; I still have no idea how mine did.
auroraphoenix Member
Just a thought, have you tried a chiropractor? If everything else had failed, it might be worth worth a shot.