21 y/o F, constant 22 month headache

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/24/2015 11:20 PM (GMT -6)   
Everyday. For 22 months. Soon it will be 2 years. I'm not in school, I can hardly leave my house. I'm crippled by the constant 5-8 pressure in the front of my head, and the depression and anxiety that comes with it. I've tried every medication. Had every scan and test. No help, no answers. Seen over a dozen top doctors in Los Angeles. I've been diagnosed with dysautonomia/POTS but don't believe this is the cause for my headache. I attribute it to teenage trauma, and trying a birth control pill (headaches started once I tried the awful pill for a month).

I really really want to die. No one understands the sufferig Im enduring. I'm almost 22, since I was 19 I've had this pain. I spent my 21st bday in the ER. A good day for me happens once a month when I leave my house for ice cream. Please help me. Give me advice. I'm on all kinds of supplements. Changed my diet. No help. I want to die.

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/24/2015 11:22 PM (GMT -6)   
On top of the headache I've had tinnitus constantly for 3 months.

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 2116
   Posted 2/25/2015 6:57 AM (GMT -6)   
If I were in shoes, I would get a genetic profile done with 23andme.com and have the results interpreted by geneticgenie.org or another of the sites that interpret raw DNA data. I would see where my genetic mutations were and supplement appropriately. Aluminum can block the methylation pathway but it can also block estrogen excretion. This could be your problem.

Many people with POTS have Lyme Disease and go undiagnosed as traditional medicine fails most Lyme patients. I would read as much as I could in the Lyme forum and do what they do to reduce their metal load and detox.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7357
   Posted 2/25/2015 10:26 AM (GMT -6)   
DeathbyM,

I take 100mg of zinc a day for tinnitus, cleared it up with 6 weeks.
Neurologist suggested to me.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/25/2015 12:32 PM (GMT -6)   
Georgia- I have already done the 23 & me test, just waiting for the results which should be in any day now. I know a lot about Lyme but don't believe I have it even though I have a few symptoms.

Bnotafraid- I'll look into it. Thanks.


I'm strongly considering leeches therapy. First they're placed on your liver to detox your body, then the next sessions they are placed around the areas of concern. I'm very afraid to do it but desperate. I believe I hae a lot of toxicity in my body from trauma and medication.

BnotAfraid
Forum Moderator


Date Joined Apr 2012
Total Posts : 7357
   Posted 2/26/2015 10:01 AM (GMT -6)   
DBM,

I have to say that a whole food diet, most veggie, with juicing involved will do the same thing if not better than leeching.

With a healthy diet you are putting nutrition into your body, while detoxing at the same time.

If you look on the resource thread at the top of this forum, there is a link for 'migrainediet'. I urge you to at least look into this before leeching.

Migraine maintance sometimes is more of a lifestyle change than a medication change.

Peace
Trina
Moderator - Depression
Be still and know there is Peace.

Kabir says: "Student tell me, what is God? He is the breath inside the breath". from the poem Breath.
DX: reverse Trigeminal Neuralgia;Cluster headaches; Atypical face pain;Hemicrania Continua; raynauds;complex PTSD; recurring MDD,disassociative disorder;

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/26/2015 11:41 AM (GMT -6)   
Trust me I've changed my lifestyle and diet 50 times over, for long periods of time. I also don't believe j have a "migraine". It's been 22 months......... And no migraine treatment including botox or Triptans have helped even .1%

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/26/2015 11:43 AM (GMT -6)   
Looking into mast cell treatment because I have horrible environmental allergies. Doctors want to put me on histamine blockers and mast cell stabilizers. Not sure if that's the answer

Georgia Hunter
Veteran Member


Date Joined May 2012
Total Posts : 2116
   Posted 2/27/2015 3:26 AM (GMT -6)   
I look at food differently than most. I see it as nutrition and macronutrient composition. I see food as a drug that either helps or hurts. Does your daily intake of nutrients meet your daily needs? I would say it does not and I don't even know what you eat. With our typical American food, there are huge nutritional deficiencies that show up even when eating healthy. Post what you ate yesterday and I'll use that as an example.

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/27/2015 10:44 AM (GMT -6)   
I'm very sick with a viral infection on top of a sinus infection so yesterday ISNT what I typically eat but it was still very healthy. I've been gluten free for a month. I woke up and had ginger tea with lemon, had scrambled (organc) eggs, lunch was beef broth soup with fresh vegetables, snack was acai smoothie, dinner was a different kind of vegetable soup. In general I have red meat 2x a month, chicken 2-3 x a month, I have lots of fruits and veggies. So no. My diet has nothing to Do wth it. I've been allergy tested and found I was allergic to a few foods so I either eat these foods never or rarely.

So diet is not an issue. I also tak a plethora of natural vitamins and supplements that my many doctors have come together to prescribe me. I am the picture of health.... Except for my health. Does anyone know about mast cell activation or Pots and headaches? Thanks.

eaty93
New Member


Date Joined Nov 2013
Total Posts : 7
   Posted 2/27/2015 4:54 PM (GMT -6)   
Reading this, I can relate so well. I don't typically post on here much, but reading this I can't not reply to share a bit of my story to try and help because it sounds very similar to me.

I'm almost 22 as well, and when I was 19, I started to get a daily headache. That just started one day and got worse till I was in miserable daily pain, I had to drop out of school, and I couldn't do anything. I was constantly seeing doctor after doctor. They tried every test they could, they tried so many different medications. With no luck at all, it started to seem hopeless. I had doctor after doctor say I was a mystery and then give up on me. I got really depressed about it as well as I lost my life.

I live in upstate New York, and one of my doctors referred me to the Jefferson Headache Clinic in Philadelphia. It was there that the doctor was able to diagnose me right away, and figure out how to treat me and continue my treatment.

As for my diagnoses, I had a atypical migraine. I actually had something called Status Migrainosus. Which actually means a migraine that lasts over 72 hours, and what happens is that your brain gets stuck in a pain cycle and the usual thing that stops the pain cycle, isn't there to stop it so it just continues. The only treatment for it, is to be hospitalized and given a medication called DHE, which pretty much stops the migraine and makes things reset. And once you are out of the cycle that you are stuck in, they are able to treat it like a regular migraine. But when in a cycle, regular migraine medication doesn't work. Its a weird thing. I am lucky enough to have one of the doctors who knows a lot about it, who was able to realize what was going on with me and treat it. And I know I'm not a doctor, but I can't help but wonder if it the same for you. It might be worth looking into.

One thing I will highly suggest if you haven't looked into already, is going to a headache clinic, I don't know much about what is in the LA area. But they know much more about what is going on with headaches then other doctors, I spent a year and a half going through my primary doctor and a neurologist. Who were trying the right things, they ruled a lot of things out. But my neurologist at the headache clinic really knew a lot more about headaches and just all the more different types.

I know how it feels to just feel hopeless, but don't lose that hope. Just keep searching for that answer to get better. There is someone out there who has it, you just have to find them. And if you have anymore questions about what I went through, feel free to ask.

deathbymigraine
Regular Member


Date Joined Jun 2014
Total Posts : 50
   Posted 2/27/2015 5:25 PM (GMT -6)   
Eaty thank you so so much for your lengthy and informative post. I don't expect answers form posting here but I need support from someone who understands. I've lost so many of my friends because they have just forgotten about me or simply don't know how to talk to someone with such scary chronic health issues.

Could you please please email me? If you click on my profile my email address should be there. I was first told about DHE infusions almost a year ago, but I didn't like/trust the doctor (even though she's considered one of the top neurologist/head specialists in the entire country). I've had botox, nerve blocks, morphine shots, toradol injections, etc etc to no avail. I have my reasons about not wanting to do DHE but your post gave me 5% hope. Please contact me if you can. thank you and I hope you're feeling better.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, May 26, 2018 9:35 PM (GMT -6)
There are a total of 2,966,279 posts in 325,324 threads.
View Active Threads


Who's Online
This forum has 162727 registered members. Please welcome our newest member, trishlongmont.
292 Guest(s), 8 Registered Member(s) are currently online.  Details
Stella Maris, newme22, alunke82, Im_Patient, PeterDisAbelard., Wilderness, cashlessclay, InTheShop