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Mighty Family!!!! I have missed you guys so much and thought and prayed for you daily ❤️

Months ago I was at my very worst. My health had gotten so poor that I was fully bed bound and unable to do anything on my own. I also needed constant care with my memory getting so bad I forgot my name, who my family was, all friends a missing blavk hole where they should have been in my memory. I kept getting lost and confused not remembering basic words and my hands were still excruciating with their inability to work getting even more drastic. My pain was a 10+ though doctors only think pain is a 1 to 10 we know it still can rise to the thousands.

Suicidal thoughts were so bad I was actually planning though losing a best friend's to suicide at 15yrs old still kept me and will always keep me from taking a step no one can come back from that haunts family and friends and leaves things so very messy and heartbreaking.

My so-called pain doctor was still doing nothing after 3 years and countless appointments begging for help I'm any form. He kept me on the same teeny tiny dose for years and wouldn't try any other meds or any other options. I had had no episodes ever of overdose or failing any drug tests but still he refused to help at all despite my first appointment with him where he promised to help me get to where I could shower and dress myself daily.

I wanted to ditch him as my doctor soooo many times despite him being my third and last option since we hadn't been able to find any replacement.
I realized the stress and misery he brought me always and especially after every three month appointment. It wasn't worth the useless dose of medicine I was on. Many doctors left me in a lurch to taper off my meds on my own. I knew how to do it so I called and said I was dropping him as my doctor. From that moment on I felt relief like the biggest weight was gone. Yes my pain was excruciating but my mental health was the biggest mess because of so many doctors refusing to help and leaving me since I was 'too complicated for them'. They just didn't want to put in the work at time.

Why be a doctor if you don't want to help anyone?!

Steadily my mental health improved immensely. I had moments where I was happy though still in pain. Naturally I am a very optimistic and happy soul but moving to a new state and having the cruelest doctors unsurprisingly made me so much worse.

I have a home health nurse that actually wants the very best for me and that was priceless and enough.

And then I got a brilliant and lovely rheumatologist who actually asked intelligent questions, explained answers, and was invested in taking as much time as needed to finish solving my health. He UNDERSTOOD!!! And at my second appointment with him he told us the answers we had been searching for for 17yrs! Since I was 13.

On top of my many inherent diagnoses I had psoriatic arthritis spine arthritis, and rheumatoid arthritis!!!!
The thing that we all thought was lupus but just barely didn't fit was the psoriatic arthritis!
It was the last piece of a puzzle we had tried solving many a time.
Interestingly I had finally narrowed my research to these diagnoses and was months away from figuring it out too.
But I was very happy to have the answers early!

My first appointment with the rheumatologist he gave me arthritis medicine and WOW did it work and so much better than any medicine my hundreds of doctors over the years had tried.
My hands improved!!!! I had feeling in them again and was able to do so much more than I had since I was 16 when I had my waist down reconstruction surgeries that would lead to arthritis all over my body especially to where I was completely unable to use my hands by 17. It was so embarrassing and painful that my body seemed so intent on not working eight. Oh how I just wanted you be normal!!!

And my last but of good news is I at LAST got a new pain doctor after being without officially for three months. My mental health anxiety and depression had improved so that my stress and thereby my pain had decreased to #9 on the pain scale!!! After being a 10 for almost 8 years!!!!!

My new pain doctor was COMPLETELY the opposite of my last one.

From a guy who ALWAYS worse fancy suits and thousand dollar shoes to one in jeans and a t-shirt.
From a guy who never smiled and wouldn't put in time and effort to a guy who smiled the whole appointment and was ready and Excited to put in the work to help me live my very best life!
From a guy who was too proper and cold to one who was so friendly and happy about his job.
From one who was terrified of any teeny hit of using medicine to one ready to take any risk if it meant helping his patients be safe but with less pain.

My new doctor was like the twin of actor Vin Diesel and he was so SO SO tall!
Even better since the drive is so hard for patients to do always, he would do telehealth for two appointments, one in person, and then another two telehealth appointments etc. Yay!!!!! Hallelujah!!!
Lol I was and still am so happy! And he wanted a telehealth appointment a week after the first appointment yo make sure my new meds were the best option.

For YEARS I have wanted a doctor who was there to help always and one who helped me with my meds rather than drop me in a black hole and leave all alone to figure out and guess by myself. To actually be a TEAM and work together to help me help my body so I would LIVE like I had begged all my doctor to help me to no avail! I could have a LIFE that I loved and do fun things and spend time with my family!!!! No more sleeping life away in pain and misery and hopelessness!!!!
It only took 17 years! Haha!

So now I am BACK and back to my happy self. I still have aches and pains full body and I have all my health issues and more besides but I am in a better place than I have ever been.

All of your support and love and encouragement to take time for ME was what I needed. I am so thankful for it and for all of your help over these many years.

Now if only it could get easier to post with no problems like before I would dare to call life quite perfect right now ;) 🙏

So consider this a reminder thar life is worth it! If things suck now, just remember that if one day they come up with something that can help you and your conditions, I PROMISE you will want to be around then to live your best life.

Hold onto hope! DON'T GIVE UP!! Please please don't. Through sheer will and the grace of God I am still here and gosh do I look back now and say it was worth the wait I wouldn't want to relive it lol but having a possibility to go to the movies again and do fun things out in the world with my family? It is priceless! Please hold on. Please. You and your best life are worth it! You are Not alone in this.

I am cheering you on and I am on your side. Your happy is out there! You CAN do this!!!!

#AmplifiedMusculoskeletalPainSyndrome #Arthritis #Asthma #Anxiety #bedbound #ChronicFatigueSyndrome #CheckInWithMe #ChronicPain #ChronicIllness #ComplexRegionalPainSyndrome #Depression #Disability #DistractMe #EhlersDanlosSyndrome #Endometriosis #Fibromyalgia #GastroesophagealRefluxDisease #HypothyroidismUnderactiveThyroidDisease #Grief #Insomnia #Lupus #Lymphedema #Headache #PosturalOrthostaticTachycardiaSyndrome #Psoriasis #PTSD #plantarfasciitis #PanicAttack #PanicAttacks #Psychosis #PsoriaticArthritis #RareDisease #RheumatoidArthritis #AnkylosingSpondylitis #MentalHealth #MemoryLoss #MightyTogether #SuicidalThoughts #Scoliosis #Migraine

44 reactions 19 comments
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Fybro pain give anyone high heart rate?

I have picked up on the fact that my heart rate goes up when my symptoms r heightened. This happened at my recent wellness check w my Dr so I’m now scheduled w cardio for a heart monitor. I told her more than once that it was probably due to my fybro flaring up that morning but she wouldn’t expect that reason so I caved into doing it. It was 121 but has gone up to 135 in past. I had an ekg there laying down n it came down to about 95- she said if it hadn’t she would of sent me to ER. Does anyone else experience this when ur feeling ur symptoms getting worse. I also had a lot of head fog that day n the daily morning headache. Feeling achy all over. My BP was ok.
#Fibromyalgia

3 reactions 2 comments
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Help Please 🙏🏽 Anti-depressants Withdraw Syndrome

Hi Everyone ❤️ 👋🏾, I am in need of suggestion, support, advice, etc. I have been on an anti-depressant medication at the highest dose for about nine years now. I really couldn't say if it truly worked or helped me from day one when I started on the lowest dose. As a patient, I am naive and uneducated when it comes to anti-depressants and which one would help me. So, like most patients, we go along blindly following and accepting medication that our psychiatrist has prescribed for us to take. We put our total trust in this person to help prescribe the right medication and dose for us.

So, over the nine years, I went along with every suggestion the various psychiatrists gave me about upping dosages and adding medications. When asked if the medications were helping me, my answer was always, "I don't know. What are they supposed to do? How am I supposed to feel?" No one ever took the time to address or acknowledge my answers, and I didn't know what to do. So, I continued to be a guinea pig and take whatever medications they prescribed.

I couldn't turn to my family's for help. One reason why they had no idea I was in crisis, they didn't know I was in intense therapy and that I was taking medications. Two, my family didn't have any point of reference to even help me. Three, they didn't care about me! I was spiraling emotionally and mentally, and no one asked me about me. If I was okay and did I need help? I tried to reach out to a family member by sharing my suicidal thoughts and feelings and that I have begun thinking about a plan. Their response to me was, "Oh, we don't do that or think that way! You need to pray 🙏🏽 and give everything to God!" Yes, I do believe in God and His plan for my life. 🤔, in the midst of my mental health crisis, I have to be honest. My thoughts weren't focused on God. It was focused on ending the pain I was burdened with.

It wasn't until three weeks ago that my psychiatrist changed. I don't believe in accidents or coincidences. I believe in my life. Everything happens for a reason. The moment I met my new psychiatrist, I knew my mental health journey was about to change. The doctor looked over my medication history and immediately said, "I am not going to add nor change any of your medications at this point. I want you to have a test completed that may provide us with more definitive answers. This test I want you to take is a generics test to show how your DNA responds and breaks down different classes of medications." I promise you, I heard the words, "Hallelujah!" ringed through my head!

I had the test performed, and within a weeks time, I had the results. With this particular test, I had to meet with my new psychiatrist and a pharm doctor to go over my test results. The pharm doctor is the one that broke down the test results in depth so I could and my psychology could understand. We discovered that my DNA does not require a high dose of medication. In fact, I require a low dose for it to have an impact. Sadly, all of my medications have increased over the years to the highest dose. All I said to my psychiatrist is that I wished one (just one) of the many doctors I see would have thought of this test a long time ago.

So now it has been decided that the best course of treatment for me moving forward is to stop trying the anti-depressant I was on and try a new medication. They believe that if my original medication ever worked, it only worked for the first two weeks if that long. They discussed options for a few minutes and then explained the plan to me so I understood what was going to happen next. They answered all of my questions. I was concerned about suddenly stopping my original anti-depressant just to begin a new medication. I explained that I the past, I stopped that medication cold turkey, and it was the worst experience I've ever endured with medication! I didn't want to stop at the time and simply couldn't afford to pay for the medication. But everyone worked out, and I started back on it.

So our game plan was to taper me off the original medication over the course of three to four weeks while introducing the new medication in a low dose. As I decreased the old medication, I would increase the new medication. This is where my problems have begun.

I am going through the worst anti-depressant withdrawal symptoms since I went cold turkey years ago. 😫 On top of the withdrawal symptoms, I believe I'm having an allergic reaction to the new medication. So now I have to taper off both medications and start a whole new one.

This is where you all come in with help!

My head constantly feels like I have a lingering headache or migraine 😫 😩 all the time. When I'm able to sleep 😴 it is extremely difficult for me to wake up and open my eyes. I feel like I'm trying to move an elephant 🐘 when I'm trying to open my eyes. I have talked to my psychiatrist and searched the internet, and everything says the same thing, "This is part of the withdrawal process when tapering of anti-depressants."

I'm just trying to find ways to help provide me some relief as my body goes this process.

Has anyone else been through this or something similar before? Can anyone help? I know there isn't a magic remedy, but there is something I can try to help me.

I appreciate everyone's advice, suggestions,and input. Thank you.

25 reactions 11 comments
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Telling colleagues why I’m off work

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

7 reactions 2 comments
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I cannot believe I'm in this situation again. *Trigger warning*

Backstory. In 2019 I moved from Texas to Pennsylvania after getting out an an emotionally abusive relationship that lasted 10 years.

I waited a couple years before thinking about dating again. It took me about 3 years to heal.

A couple years ago I reconnected with an old friend from elementary school. We started talking every day and eventually that let him to fly in to see me. We kept this going for a few months and then decided that he should move up here with me. (this was before he told me about his bipolar disorder and bipolar mania)

Everything about him was perfect. We meshed together really well. The first year was one of the best I ever had with anyone.

Then the random manic episodes kicked in that first winter together. At this time he wasn't on meds. Eventually, he agreed to see a doctor and try medication due to the mania getting worse and affecting our relationship.

3 weeks ago he had the worst mania I had ever seen. At the end of it I found him choking himself to death with his belt. The sight of this made me go into the worst anxiety attack I had ever been in and I vomited 4 times. I've had an on and off headache/migraines every day since then as well.

I haven't been the same since this incident and feel like I should go back home at my aunts down the road to start over again. The outbursts aren't towards me but it makes me feel the same way I felt in my last relationship. Depression, anxiety, walking on egg shells. I don't want to feel this way anymore. I don't want to live the rest of my life like this either. This was the breaking point I think, as there has been some other troubles caused from his bipolar disorder. He can barely hold a job, and doesn't handle stress like normal people would, lashes out quickly. . It also affects my fibromyalgia. The outbursts and anger cause me to flare up. I haven't felt good all month. I don't blame him. I know he is ill.

He's done everything he could to try and make this work and make our lives better. I think this makes me feel guilty for wanting to end things because unlike my ex, at least he put an effort into by seeing a doctor, getting on meds, trying therapy.

My fiancé has a flight April 13th to visit family for a week and I plan to tell him I think he should just go home permanently, a few days before he flies out. And I don't mean it bluntly. I plan to discuss my the feelings I've had these past 3 weeks and tell him I just can't do it anymore and that I've been contemplating things for a while.

*Side note*

He was planning to move back home to Texas within two years anyway and said he would do it with or without me as he wants to be closer to his kids. I personally do not want to go back so ultimately, I think it's better to break up now cause we would break up over this in the future. When we first discussed it I said maybe but with everything going on, I think It's best to stay here with my family and figure things out again on my own. Hopefully I will learn not to make the same mistakes again. I'm tired of my heart hurting.

#Depression #BipolarDisorder #ChronicFatigue #Fibromyalgia #Relationships #Breakups

12 reactions 6 comments
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Music pt2 #GeneralizedAnxietyDisorder #OppositionalDefiantDisorder #BipolarDisorder #brokenheart #Depression

Now imagine these same lyrics from the point of view from a man’s perspective. Hey Mama, how do you get a red wine stain
Outta your favorite dress?
Black mascara off a pillow case?
Cure a one-too-many headache?
Mama can I come and maybe stay a few days
This weekend or next?
And hey, how do you get a red wine stain
Outta of your favorite dress?
How does he sleep at night?
Mama, the nerve of this guy
To leave me so easy
Am I gonna be alright?
I wanna kick myself for falling so hard
Mama, can you die from a broken heart?
Can you ask Daddy if he's got time
To come and look at my front door?
It got slammed last night
And now it don't close right
And just promise that you won't tell him everything
And keep that pistol in the drawer
Mama, please don't say
I'm gonna laugh about this someday
You didn't see the way he drove away
How does he sleep at night?
Mama, the nerve of this guy
To leave me so easy
Am I gonna be alright?
I wanna kick myself for falling so hard
Mama, can you die from a broken heart?
Oh, a broken heart
Can your knees give out from praying so hard? (praying so hard)
Can you go blind from crying in the dark? (crying in the dark)
Was it ever really real
If he don't feel like I feel?
How does he sleep at night?
Mama, the nerve of this guy
To leave me so easy
Am I gonna be alright?
How does he sleep at night?
Mama, the nerve of this guy
To leave me so easy
Am I gonna be alright?
I wanna kick myself for falling so hard
Mama, can you die from a broken heart?
A broken heart?

1 reaction 1 comment
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Fybro symptoms worst in AM

Are anyone else’s symptoms worse in the morning? Come evening time I feel pretty much like my old self sometimes but the morning is such a struggle with the pain and brain fog to get started. Every morning I wake with a headache and body aches and pains. I always have to push myself to get going. I start to feel better in the afternoon. Does anyone understand why this is? Or have any ideas of what is helpful?
#Fibromyalgia

16 reactions 5 comments
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Anxiety &cptsd

Sometimes the smallest task throw me into paranoid anxiety . I don't know if it's my extreme anxiety or cptsd or both that causes it. Being at work and taking care of my patients is the only thing that keeps my anxiety at kind of minimum but I know I can't work everyday for the rest of my life.
This gives me a headache.
#CPTSD #Anxiety #Depression

9 reactions 1 comment
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Migraines: Breaking Through the Black Ceiling

We recently moved a couch into a room for me that used to be my ex-roommates'. (I've slept on the living room couch for years due to various health issues.) Said roommate had painted 3 walls and the ceiling black. WHY would someone paint the ceiling black? BUT BEHOLD! Lying on the couch, waiting for the room to stop spinning, the sun to stop screaming, the bird ballads to stop blinding me... That black ceiling was suddenly my best friend. No white, wicked fireworks swirling above, demanding my blurry, blinding deliberation. It let my eyelids laze and focus on not losing my lunch. So I implore you, dear migraine community, paint those ceilings dark. Match your wall paint. Do whatever you think might give you some relief because, at the end of the day, surviving is more important than living in a Pinterest picture. #Migraine #Headache #PseudotumorCerebri

5 reactions 2 comments