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Please read this post... I could really use the help right about now

Jun 13, 2017 7:19 PM

I am fairly new here but anyway my story shortened is for 9 months now I have severe chronic migraines all day everyday they never go away ever. Right now they are semi crippling. I am usually at about an 7/10 but right now I don't feel good. I live in a hot climate and live in a one no ac room house with my family. I tend to get side affects from the heat including nausea and dizziness to the point of blacking out. This would be my first question what reccomendations do you have to help with this. Secondly does anyone feel this way besides me, when you are in a lot of pain you get agitated and also very ocd. I do. My younger brother forgets I have pain and is trying to push my buttons in any way he can. I am kind of ranting right now I've just had one of those days where you hold back the tears when talking and if anyone says anything negative or raises their voice I will cry. Does anyone else experience this and please any advise would be greatly appreciated. If you have any coping mechanisms/ calming mechanisms I would be so greatly appreciative. I am trying to not get mad at my family because I know they try but it's hard so anything would help. I would prefer to stay as natural as possible meaning not using medication. Thank you so much. My heart goes out to all of you and I hope all of you have the best with treatment.

Jun 13, 2017 10:18 PM

Kenz, is the lighting in your home of florescent bulbs or any of the new bulbs out there. That is my migraine trigger. Also, keep a record of each bit you put in your mouth. Food, scents, colors of room aura, all add to migraines. For coping with family all I can suggest is have a sit down conversation, ask them to help discover your triggers. They should help you figure out when you start getting to the unbearable stage. Your body language is what they need to help you watch to find your triggers. With a daily headache you need to change your environment for a few days then to return home. Hopefully you have had an MRI that shows your brain stem not just your brain. Look at your headaches as a science experiment, log every thing you do, feel, taste in the mouth, smells, etc. It took me a few weeks to figure my triggers.

Jun 13, 2017 10:29 PM

Thank you zetarlov, sadly I do not have triggers it's like any other chronic pain. We do not think it is a migraine but rather some underlying cause. Literally no medication touches it. I have had several images finding an arachnoid cyst by my cerebellum. My family is very helpful I just am trying to figure out how to not lash out on them in pain. Also something interesting is elevation greatly affects me. I have tried everything. Thank you though for all of that

Jun 13, 2017 10:35 PM

Have you joined a facebook support group yet. Now knowing what the underlying cause is that is where I would go for help. I know I use several Tarlov Cysts sites for help. You can read and share on those sites and they usually are very private. If you join one you can do like I did and stay quiet for a while and just read, then when you are comfortable start posting questions. It will work wonders for those lonely times

Jun 13, 2017 10:39 PM

We are not sure if it is the cyst yet though

Jun 13, 2017 10:44 PM

From what I have learned about them, you still need support from a group. I have researched every cysts that our spine and brain stem can have,. You have one of the three worst ones out there in my humble opinion. I don't mean to scare you but encourage you to get support. The more you educate yourself the more empowered you can be.

Jun 13, 2017 10:54 PM

Thank you. At this point it's very confusing. The cyst is a potential issue but is considered non harmful and there is also suspicion of diseases such as febrae and celiac along with other metabolic diseases. I will definitely check those out though thank you for that. I am always looking for new input and things to consider

Jun 13, 2017 11:40 PM

Zetarlov I hope that didn't sound rude I am sorry if any of it did. I'm just so confused and a little frustrated with the doctors i have so I'm sorry if that sounded rude but that is no excuse if it did

Jun 14, 2017 1:52 AM

@Kenz. 😊 welcome to our group 😊 I'm sorry you was having a really bad day 😐 I hope it got a little better for you . I'm sorry to hear about those headaches. I get really bad once if it is too hot outside . So I understand that way too well


Sending prayers your way. ☺

((Gentle hugs))

Jun 14, 2017 8:14 AM

I work with a woman who has chronic migraines as well. Her doctor told her to try pure oxygen. I saw that small canister of oxygen on sale at Big 5 sporting good stores for $14.99. I told her about the canisters at Big 5 and I have not heard whether she has tried that or not. She said her doctor told her that research is showing that the oxygen helps migraines.

Jun 14, 2017 11:46 AM

Simplistic question: Have you thought about moving to colder climbs? It must be awful for you. Gx

Jun 14, 2017 11:53 AM

I've considered moving a few times to lower elevation because it seems to make it more tolerable

Jun 14, 2017 11:22 PM

Kenz, nothing sounded rude to me!, lol

Jun 14, 2017 11:41 PM

I can't speak to the migraines, but I know more about relaxing. Have you tried mediation or guided imagery? You can search YouTube for scripts that sound good and voices that are relaxing. Lie down in a relaxing environment, close your eyes, and listen.

Also, along the audio spectrum is isochronic tones. The best one to try is the Schumann reasanonse although you can find ones specially for pain. You can find one on YouTube that can just be the tone (weird beeps) or ones that have relaxing music or sounds over the tone. If it says binaural r tone you need headphones or you can get sick. The music should be soft or the tones should be barley audible. If one tone doesn't work, try another. They have different frequencies and don't work the same for everyone. I encourage you to read up on the science of isochronic tones if you are interested.

People find low impact exercise helpful, like yoga.

I hope one of these things help.

Jun 15, 2017 5:01 AM

@ Kenz, I took suffer from crippling migraines. To the point that I was getting mild brain damage from the fact my brain wasn't getting a rest from the constant migraine. I also get a stutter, tremor and my left side of my body goes completely numb.
I got put into a trial to do Botox therapy of 32 needles every 3 months. It has given me the ability to function again...until I get a flare and then I can have a bad day.
Ice packs at the base of your skull are a good way to ease the pain and cool you at the same time.
I usually use a heat pack over my temple at the same time.
Sorry for the ramble but hope it helps. :)

Jun 15, 2017 8:02 AM

That's ok I wish I could say the botox. Work a for me but it does not

Jun 15, 2017 9:02 AM

Yes I've had migraines for a long time. They are normally stress triggered for me, particularly prolonged overexertion and usually combined with emotional stresses over a certain prolonged period (sometimes a number of different stresses). If you cannot find peace of mind from noise, then when all other factors have lined up, your in for strife. When it happens, the best thing to do immediately is ice pack, to bring the temperature of your forehead down (you may feel hotter when the headache happens). If not feeling hot, then perhaps it's more a mild headache symptom tied in with anxiety.

For me, my immune system is always giving me problems. Think about whether you are getting ringing in your ears or whether you recall ever having strange senasations before that others find odd (like Alice in wonderland syndrome), as it could be linked to an autoimmune illness, these are often caused by some sort of underlying issue like a virus or bacterial infection you may have contracted. If you've been getting headaches for many years, it's possible, but complex to work out, you could have contracted a viral infection in the past that you perceived as a bad normal flu, though I assure you, there are many viral infections like mosquito born diseases that people contract and they only develop an initial minor symptom perhaps due to a strong immune system at the time. Though viruses are composed of DNA and can combine with our own cells DNA and essentially small colonies can evade a immune system fight, prob due to they can quickly evolve and alter their DNA to emulate host DNA or hide in parts of your body that the immune system will attach like your ears (if you get sore ears and eyes see vestibular autoimmune diseases), endocrine system, lymphatic system, synovial joints and potentially nerve system. Good luck. Cold showers. Lots of iced water to drink, stay away from alcohol, eat anti inflammatory foods and other foods to support the other systems I mentioned if you have any pains or problems associated with them. It's good to try sense other areas of your body that might have less painful issue which may trigger around the same time as your headaches. Try some (propolanlol) for headaches, it's actually supports immune system responses too, so if there are other pains you get, if it helps them too...maybe more complicated. I hope not.

Jun 16, 2017 2:55 AM

For 11 years i have suffered from CHRONIC MIGRAINES i have one 24/7 i live in Florida its now our sumner i cannnot go out between 11 am 4 pm its so hot my head explodes... Not much helps honestly .. I sit in my shower chair let water run over my head n body kinda rub my neck n head a bit.. I also yse a cold pack put it on my neck some times that lessons the tension it truly verys with my day what do n did effects my head ... I drink a lot of YOGI brand herbal teas the honey lavendar relaxtion is bessst ... I luckily have a pain management doc for a year now i am in a alteration of muscle relaxers n tylonal with codiene it helps to keep it reined in some what... Good luck i kniw how frusterating n shitty this gets hugz

Jun 16, 2017 9:00 AM

I think someone mentioned Facebook groups for chronic pain. Between this app and the groups on Facebook I've learned a TON. You might search chronic migraine and see what pops up. I've only had a handful of migraines in my 38 years, and I give my DEEPEST sympathies to those of you dealing with them on a frequent basis. I don't know how y'all do it. ❤️

Jun 17, 2017 1:31 PM

Goobette38 thank you so much

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