Frustration and hopelessness

I am a 26 year old female from Pennsylvania. I have struggled with migraines as far back as I can remember. (I remember leaving school in first grade d/t severe headaches and vomiting). I also always have a headache in some form, even when I am not in an active migraine. I do not remember a time I did not have at least a dull nagging headache. I was diagnosed with migraine at age 9. My migraines not only cause excruciating head pain, but I also experience intense nausea, vomiting, dizziness, fatigue, body aches, abdominal pain, crawling sensations on my skin, hot flashes, severe mood swings and irritability, as well as hallucinations (amongst many other symptoms) hallucinations don’t happen often, mostly just when the migraines get real severe (auditory and olfactory) these are usually when the pain is at a 8+ and I’m on day 3+ of the same intense migraine with little to no relief.....

As a child i also experienced abdominal migraines, or as some would describe as migraines without the headache, and at the time i never linked the two together and neither did my doctors; however looking back they now also agree it is what i was dealing with. When i was 14/15 my migraines started to become more severe, and more often. I went from one every couple months to one every couple weeks, normal pain relievers stopped working, and they persisted for days. When I was somewhere around 16/17 they got worse again, becoming more chronic in nature. I was now experiencing at least two a week. By the time I was 20 I had been on 8 different preventative medications; 3 different rescue medications; and been to 5 different neurologists and headache specialists. Also by age 20 I was getting nearly daily migraines (averaging about 15 a month). At about this same age I realized when I drank enough alcohol; I couldn’t feel the pain anymore, . (Mind you, it always came back tenfold when I sobered up). I had been a pretty heavy drinker and for a few years I blamed my drinking on being the “cause” of the migraines. (I realize now how wrong I really was!)

[to not go off on another aspect of my life I’ll keep it short. I became a chronic drinker and eventually a full blown alcoholic. I got sober at 23 and haven’t looked back]

When I got sober and the chronic migraines persisted, I accepted that they were a part of my life, and likely always will be. By the time I got sober my migraines had increased to an average of about 20 per month. I began getting Botox treatments and I thought I had finally found the answer to my prayers!! One week after my first treatment and I noticed the migraines becoming less severe. I noticed my abortion medications working better then ever! And I noticed how much better I felt in general.

I continued to get my quarterly injections and was happy to be down to about 10 a month, most of which were easily resolved, although I did have some very severe ones in there, they were far and few between. Fast forward to this last fall. I went in and got my injections, same as always.. typically as the injection date gets nearer, the migraines increase because the Botox has worn off. But this time, after getting my treatment; they continued to get worse. I didn’t get the relief I typically got! I had 16 migraines that month.... back to chronic. I felt completely defeated, but forced myself to push on and try to fight through them. however the more I fought, the worse they became. The frequency and severity of my migraines has continued to increase ever since. I’ve had two more rounds of Botox since then, and I am still chronically sick. I get them nearly daily, and in the month of May I did not have a single migraine free day. I am back to feeling completely defeated and out of hope for ever having a “normal” life. I lost my job in April as a direct result of the issues caused from my migraines (missed time, decreased performance, lateness, leaving early, etc.)

I have tried so many different routes and yet here i am, sicker than ever. My current MIDAS score is 56; and if you know anything about how this scale works, you know how crazy high this number is!. I am frustrated and have really given up all hope of finding relief.
I am 26 years old and have filed for ssdi d/t chronic migraine. I take advantage of every good day I get, even though I know I will pay for it by being even more sick for the next week. Any change in air pressure. Any change in humidity. Any drastic change in temperature. Will put me into a migraine. I eat completely clean (no preservatives, artificial food coloring, artificial sugar, artificial flavors, nitrates, sulfates, phosphates...) again, at first the change helped, but eventually the migraines increased again. I still eat clean, for anytime I don’t, I regret it in about 20 minutes when I get a level 7+ migraine.

My story isn’t over. My life is still going. I hope someday I can come back and boast about how long I’ve been migraine free... I try hard to remain hopeful and not get so frustrated. But deep down, I really don’t think I’ll ever find true relief.
(Sorry for the rambling story line, currently have a migraine as well as have taken my medications for it)

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