Long term sufferer of chronic headaches/migraines

[FreesignerRichie]

hi all, I’m new on this format.

I have headaches/migraines every day, my normal headache the tension ache is always there. I’ve been suffering from chronic headaches/chronic migraines for around 16 years, been admitted into hospital more times than I can remember for suspected stroke, TIA. When all tests and every scan comes back clear, then to have every specialist or consultant to tell me the problem is inside my head. Give me many medications over the years, for example I have had, triptans, tripterlines, antidepressants, morphine, every painkiller you can think of I have had or tried but not 1 has even helped with the migraine. My symptoms after reading so many posts are the same or very similar to mine so I won’t bore you all with them. So I’ve had no treatment plan, or on any medications for many years. I had to learn to try and manage with great difficulty as health professionals were not good… what could I do. I’m sure you all have had similar experiences like this.

until recently I’ve been diagnosed with hemiphlegic, vestibular, ocular and silent migraines along with cluster headaches. I’m not trying to show off…lol. Has if 1 of them ain’t bad enough but to have all… by Christ how have I managed. My neurologist have started me on gabapentin and told me to take the maximum dosage of 900 mg on a bad day. My days or roughly every 4/5 days and last all day or even days with paracetamol and aspirins. Has anyone tried that much dosage and can help me of what to expect, I have a feeling I’m gonna be a zombie.

[Cat00]

I was on that dose for years, never had problems with the zombie effect but then I'm generally hyper alert. The only problem I had was with weight gain. Lost the weight when I stopped Gabapentin and Pregablin.I've had chronic migraines for about 30+ years, like you have been on everything. The CGRP made things considerably worse. Stopped them about 2 years ago and had 10 rounds of botox, still having almost daily migraine. I'm at a loss, sick of sideeffects for not much relief. It sucks.

[FreesignerRichie in reply to Cat00]

Hi Cat00, thank you for your reply, my neurologist has already mentioned to me about the injections but I was not sure what type tho of what their referring too. Yes I agree it sucks. I’m struggling to cope with the shooting pains which start between the shoulder blades then right up the back of the neck and into the head, I used to have these on one side, now it’s both sides feels like electric shock, then stabbing before then they shoot across the back of the head. I also have auras, vertigo as well has many more. I thought I had found a pattern and triggers then bam… everything changes and now I’m back to square 1 of finding triggers and a pattern again. I guess that’s migraines for us. They do take over our lives and so very disturbing too.

[Cat00 in reply to FreesignerRichie]

I stopped looking for triggers a long time ago. When our brains have become this sensitive they rarely drop below the trigger threshold, everything's a trigger. I'm an insomniac, sleeps an unsolvable trigger. I have quite a few chronic pain conditions, stress is another insolvable trigger. The only thing I use to any degree of reliability is intense exercise. Staves the pain off for a couple of hours most days.

[Pisces14510]

I have been on neurotic 300 mg twice daily and inderal twice daily for years . It doesn’t take them away but it does help . Aspirin is the only thing right now that helps. Like you I’ve been on different meds but all the same result

[FreesignerRichie]

thank you pisces14510, I have tried them too and did not even touch the sides I felt like I was just taking paracetamol so I stopped. I know not everyone is the same, and also what works for other might not work for yourself. But I’m pleased that they helped.

[Knittingnoodles]

i haven’t tried painkillers for my silent migraines, but I have a neurologist in NY who is treating my chronic migraines and headaches with blood pressure medication and Nurtec. It’s given me a lot of relief

[FreesignerRichie]

thank you knittingnoodles. I’m assuming the neurologists in the US are more thorough and willing to work with the patient. I’ve learned over the years that the neurologists here in uk so far are just to quick at giving us antidepressants and referring us psychotherapy and not willing to work with us. Maybe I’m with the wrong neurologists lol.im pleased for you that it’s giving you relief

[FreesignerRichie]

thank you cat00, I agree with you, I’m not saying that I’m looking for triggers, like yourself I have insomnia which doesn’t help I know, but for those of us that suffer with insomnia we have a good reason of why we are insomniacs. Exercise I had to stop due to the amount of shooting pains into my head I’d get. Even now I can’t have anyone standing or next to me on my left side because of the intense shooting pains into. I’d love to an Hour of pain free but even that I’m I’m dream land. I’m now searching and looking for groups like this who know exactly what we’re going and living through. Do you get the shooting pains?

[Cb1963]

I'm currently in a cycle of cluster headaches, and when people say headaches or migraines aren't a big deal, rest assured these cluster headaches are the mother of all pains known to mankind, that are sometimes called suicide headaches as they leave you feeling at your wit's end. Now I've had the injections in the base of my neck and they didn't do anything, my last resort of medication is currently verapamil along with the sumaptrapin injections which actually stop the headaches going into a full blow mode, but only if you catch them right at the beginning, doctors can't diagnose different headaches etc, a neurologist is the best way, but there's numerous headaches and migraines and it's trying to find a medication that works, best of luck .

[FreesignerRichie in reply to Cb1963]

Hi Cb1963, thank you for your response. I have heard of Clusters headaches, but never actually looked into them or done some research about it. Maybe that is about to change. I’m interested into finding out what these shooting pains sometimes feel like electric shock stabbing pain is. and seeing if there is a link at all. ATM there is No medication or preventative that works with me.