Chronic Daily Headache

Trouble sleeping has kicked in yet again, and I know my worsening mental health isn’t helping, either. This September will be twenty years of my chronic migraines. Or, more so, the horrendous pain and symptoms that literally have never left my side.

A few months ago, I was diagnosed with trigeminal neuralgia. Additionally, I have fibromyalgia, depression, and anxiety. That said, I’m pretty dang certain I’m AudADHD and leaning towards POTS and/or hEDS.

But while these ailments continue to worsen and affect my ability to work greatly, I can’t get myself to address these “newer” thoughts and issues with my doctor. The feeling of being a burden on anyone runs far too deep, and I’m honestly unsure of what would be the right amount and timing of addressing things before becoming annoying or appearing to be drug-seeking or a hypochondriac.

Does anyone else struggle with bringing up new ideas or issues? The worst part is my PCP is amazing and I know she wouldn’t brush me off. But those inner beliefs and fears of burdening anyone is far too great.

I’m not necessarily looking for advice or anything. Just feeling very isolated right now and needed to get thoughts into writing. Perhaps maybe I’m not the only one who feels this way?

Course, the panic attack this afternoon certainly did not help any.

#Migraine #ChronicDailyHeadache #Fibromyalgia #MentalHealth #ADHD #Autism #ChronicPain #Depression

Hi, my name is jle1490. I'm here because
I have ME/CFS and I am looking for a connecti on with others with this illness. I am also interested in what treatments have helped others.
#MightyTogether #ChronicDailyHeadache #ChronicIllness #chronicepstein-BarrVirus #ChronicFatigueSyndrome

I am starting to return to normal after my relapse. Things were a blur, I was unable to take care of any responsibilities for the past 4 days or so. The friend I was going to reconcile with, I don't even know if I would be able to trust her. I do want friendship, but I am starting to believe that a new start in that area would be best, as opposed to attempting to put trust in someone who I likely stopped trusting for a reason.

Today is my adoptive mother's birthday. The only mother I know, but we are no contact and this will be the first birthday of hers that I don't reach out. I feel guilt because I am loyal, and perhaps overly forgiving of the things that she had done, perhaps because of some deep need or desire to have a motherly figure in my life but I am old enough now to nurture myself and realize that there is no point in a warm hug if it comes with a stab in the back.

For the most part though I am calm, even though our downstairs neighbor has decided to scorn the whole building and blast the same 5 VERY overplayed songs on repeat since 3pm yesterday until 5 pm today. It is quiet now so hopefully it is over but I'd be lying if I claimed to not be overstimulated and almost driven to madness because of it, not enraged or anything but my head hurts from the relentless repetition. It's quiet now and I hope it stays that way, we didn't knock on his door but left a note and could hear him saying "F U" again and again for a while once he found it, plus turning the music up. He seems in some sort of psychosis and volatile state so i just hope that he burns himself out and calms down so I can calibrate myself enough to get some work done today.

I hope you're all having a peaceful weekend 🌸

#MentalHealth #Anxiety #ChronicDailyHeadache #PTSD #AddictionRecovery

Hope everyone is okay and ready for the holidays! Hope you get relief from illness and pain so you can enjoy the week. Get migraines a lot less than I used to but had one last night. In Connecticut it’s in the teens. Beautiful with just enough snow covering to make it pretty for Christmas. Used to get migraines that sent me to the er once a month. Even took part in a clinical trial for migraines. Now only get one once in a while. Migraines are one of the worst pains you can suffer from, and even had lupus cerebritis once.

Hi, my name is marv. My life is crazy. I've been diagnosed with a genetic hypermobility syndrome and chronic pain. Ttauma is also part of my life. I'm here to help and find connections to talk about stuff. Feel free to hit me up

#MightyTogether #Anxiety #Depression #PTSD #Fibromyalgia #HypermobilitySyndrome #ChronicDailyHeadache #ChronicPain

I’ve been off work for a few months while we investigate some newly developed and worsening health issues. A few colleagues that I’m friendly with have started to reach out to me and I’m not sure what to tell people because I don’t have a diagnosis yet. I don’t want to share details, but I’m really hopeful that I’ll be able to go back to work with these people some day soon, so I also don’t want anyone thinking I’m just using this as an excuse for a long holiday. I know I shouldn’t care what anyone else thinks, but I do have a professional reputation and in that environment (very large federal government department), I work with a lot of people and it doesn’t take much for the rumor mill to cause lasting damage.

Any guidance or suggestions on how to approach these conversations?

#Fibromyalgia #Lupus #guidance #ChronicDailyHeadache #Headache #ChronicFatigue #MentalHealth

So we got a diagnosis for Fibromyalgia from the Rheumatologist. And just recently I did get an official diagnosis for POTS. We have upcoming appointments with a dietician and a geneticist to discuss suspected type 3 EDS(I have the criteria and we were told this from a professional). Fibromyalgia is genetic and turns out my aunt had it. It lies dormant in your system until something traumatic happens and it triggers it. Hers was a car accident and we suspect mine might have been the HPV vaccine, we aren’t sure. Funny enough all this is rare to happen someone of my age, I’m not even an adult yet and here we are.

I don’t think of this as good or bad news but we are making progress and I view that in a positive light.

I am on a strict elimination diet because meds are our last resort especially with my track record of all of the rare side effects. I had to cut my hair because it was falling out because of Metoprolol, but on the positive side my hair is healthier shorter (it’s curly and was in need of a trim).

I have been eating rice, chicken, broccoli, cauliflower, gee(butter alternative), olive oil, 2 teaspoons of salt daily, and just water (80-100 oz daily). We also slowly reintroduced avocado and turkey which my body was fine with.

It is a slow and very annoying process because all I want right now is chocolate, bread, and ice cream (my kryptonite). The diet is working and I have done nothing but improve as of late. Although we tried a bunch of new things in one day and we regretted it shortly after because I wasn’t able to walk because of how dizzy I was, and I had a on and off migraine for 3 days. I had 1 chunk of pineapple, 2 strawberries, Liquid IV drink mix, and some supplements and my body did not like that. So we are taking it even slower now.

We know I can’t have gluten right now, and maybe sugar but I’m in denial about that right now. I have always been sensitive to sugar and caffeine, but I had a strawberry and I was okay so maybe there’s a limit on how much I can have? Although my blood work did say I have low blood sugar so we don’t know.

My metabolism has skyrocketed though! I eat that meal above 4-5 times a day now (and I’m still hungry), and I’m still losing weight (which isn’t necessarily good at 5’4 and 113 lbs). I have actually lost over 10 lbs of muscle since October so we are working on getting me active again.

Overall this is definitely a process and also an unintentional David’s fast lol. Life is looking up a bit finally!🩵

#Fibromyalgia #MightyTogether #ChronicFatigue #POTS #ChronicFatigueSyndrome #ChronicDailyHeadache #ChronicPain #Migraine #EhlersDanlosSyndrome #MentalHealth #Depression

So turns out I have Fibromyalgia, which explains A LOT. I could still have POTS though, but I’m finally getting somewhere! (I saw a rheumatologist)#Fibromyalgia #MightyTogether #ChronicFatigue #POTS #ChronicFatigueSyndrome #ChronicDailyHeadache #ChronicPain #Migraine