Please help!!! Is there anybody else with... - Migraine Support

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Please help!!! Is there anybody else with something like this?

Rin9
Rin9

I'm 26 years old and I suffer from chronic migraines and tension headaches I've suffered from them all of my life. One of the very first things I learned to say was my head hurt. My parents took me to doctors who said that I was young and would probably outgrow them. I didn't, as I got older they just got worse and more frequent to the point when I was about 13 years old I realized that the pain quit going away. it's been 13 years since then and I haven't had one single day in which I wasn't in pain. Over the last two years, do to other unrelated health problems. I have finally been able to seek medical attention for my migraines, the problem is that they don't know what's truly going on with me. They just sum it up as migraines. I've tried many meds, anti-seizure meds, painkillers, several specialized migraine meds. But nothing seems to help my doctor's to the point where he's just going to refer me to a pain management specialist and just have me on painkillers all the time. The problem with that is that most painkillers barely help if they help at all. And I get horrible side effects. My head feels like there is a hurricane inside of it while on the outside my skull is being crushed in. Do any of you have anything like this? Has anyone even heard of something like this? Does anyone got any suggestions on meds to try? Or preferably natural remedies to try? Please anything helps

Sorry about writing such a long post. Thank you for reading.

20 Replies
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You bad to ask to be referred to a headache specialist. I suffer from Hemicrania continua which is maybe what you have. I’m not as bad as you as I do have the odd few days respite. I’m now taking high dose magnesium and VitB2 also using the gammacore device which was advised by my headache specialist. Pain is not as frequent or as severe. Good luck xx

Rin9
Rin9
in reply to babs1234

Thank you so much. I'll definitely look into hemicrania continua and gammacore. I'm trying to get in to see a headache specialist but my insurance is being reluctant want me to just try pain management first. Which I personally think is absolutely ridiculous. Thank you for the advice I'll try talking to my doctor about it. Thank you for responding to my post. I need all the help I can get.😀

babs1234
babs1234
in reply to Rin9

My headache specialist insists I don’t take painkillers as it is quite likely they can actually cause rebound headaches so maybe inform your insurance company of this fact

Rin9
Rin9
in reply to babs1234

I'll definitely do that maybe even get my doctor to tell them that. Thank you so much I never even thought of that. Your the best!

I am sorry this is happening to you. I have some ideas for you that I hope will help.

Have you requested or see a "headace specialist" they are typically Neurologists that only see patients with headaces?

Have you gone to:

migraineworldsummit.com/

They are not there to sell anything. The 2 owners both suffer from migraines and they change people's lives. They have many many workshops that are doctors and specialist that talk about everything having to do with migraines.

Here is what I have learned: I was taking way to much over the counter tension medication pills and was not using all of the other things to help me. Ice, hot/cold shower, peppermint everything ( hot tea, white and red candy, roll on,) and I was not taking the right supplements.

I now take Feverfew, riboflavor 400mg and magnesium glycinate ( special kind). I am also looking at things like sleep, pain in my neck. I am also considering a Neuromodulator. I learned all this by the website.

I also keep a daily calander for all medications and pain levels with Migraine buddy ( I have to have at least 2 months documentation) for being eligible for any of the new injectable medications.

I am also now using injectable triptans. Also double my water intake.

Ok enough from me, please consider some of these to see if you can be helped by these.

Have a great weekend.

Rin9
Rin9
in reply to Onthemove1971

Thank you so much for the advice and the link. I am definitely going to check it out. I can't express how much I appreciate it. You have a great weekend as well

Yep I feel for you, I take it that you're not in the UK? I'm now suffering with migraines on a daily basis, I suffered with them on and off over several years but they are now with me constantly, however I was prescribed propananol which at the beginning did help, but I'm now having to seek further medical advice, unfortunately my headaches normally wake me up while I'm asleep, and I'm getting a tension headache during the day due to the lack of sleep, as for painkillers my doctor told me to stick with paracetamol, and not codeine, Im now trying a new tablet called topiramate and I'm not up to the full dosage yet, I also take a tablet called naratriptan when a headache comes on, but trying to get a proper diagnosis is a nightmare, you would never think there are that many ways to describe a headache and of course what symptoms they have in common, my sympathy is with you and definitely you need to have a more in depth conversation with a neurologist, or perhaps a scan, I hope you get rid of the migraines and then you can get on with enjoying life, good luck for now, thanks.

Rin9
Rin9
in reply to Cb1963

Yeah I'm in the US trying to get a diagnosis is a nightmare. I've had multiple blood tests CAT scans and MRIs and it shows nothing helpful. I've tried topiramate myself didn't help me but my doctor swears by it for most of his migraine patients. Be warned it's used as an off-label appetite suppressant so if you're trying to lose weight it will probably help but if you're not trying to lose weight or can't afford too. Be careful to make sure you are eating enough. I was on it for only like 3months but I lost over 20lbs which for me was great. I've never heard of paracetamol but I will definitely look into it and maybe get my doc will want me to try it. Thank you for reading and responding to my post. I wish you the best of luck as well.

Yep sometime tablets that are prescribed for one condition can often be used for another illness, I take a tablet which is primarily used for epilepsy, but it also helps with nerve damage, so tablets sometimes can have a multiple effect, paracetamol is a basic over the counter remedy, but like with any medication stick to the correct dosage,I presume that you have paracetamol over in the USA 🇺🇸 like with all over the counter medication stick to the correct dose, they only cost pennies over here, I'm not saying that they will cure you or help, but I'm only taking advice from my doctor, as I tend to keep the naratriptan during the night, it's bad news setting the table up with tablets knowing I'm going to be woken up in the early hours, I shall watch out for any changes in my eating habits, I don't mind shedding a few pounds, thanks for your reply, best wishes.

Rin9
Rin9
in reply to Cb1963

Thanks for the info I'm sure we have it here or it can be ordered. Waking up in the middle of the night with your head killing you is the worst it happens to me all the time. I find putting a hot water bottle on the back of my neck helps the pain ease a little faster and so I can fall back asleep faster. Maybe you can try it out. Might help. 😀

Onthemove1971
Onthemove1971
in reply to Rin9

Thanks for this, I use ice in the middle of the night and it really helps.

Rin9
Rin9
in reply to Cb1963

Yeah we totally have it here I take it daily. Funny things you learn. I googled it and I've never heard of it before because you guys call it Paraecatmol where we call it acetaminophen or Tylenol. I thought it was interesting so I thought I'd share. So if you're ever talking to someone else from the USA call it acetaminophen or Tylenol and I'll remember to call it Paraecatmol when talking to people from the UK.

Cb1963
Cb1963
in reply to Rin9

Ah ha, the power of Google eh, all very confusing especially when we all speak English on this site, I suppose its how it's advertised and marketed at least i understand the American version now, thanks for the information,cheers 🥂

daith piercing helps, capsaicin cream inside nostrils helps but burns,migra spray and changing long term meds have all gave me temporary relief from my daily migraines and triptans take the pain away when they do come, but no permanent fixes yet

Thank you for the information. I'll look into those things for sure. I really appreciate it. Maybe one day we will all get lucky and some scientists somewhere will find the cure all for migraines. But until then I wish you the best of luck with your migraines. 😀

Onthemove1971
Onthemove1971
in reply to Rin9

Please let us know if you have found anything that helps. Good luck

Rin9
Rin9
in reply to Onthemove1971

Thanks. I'll definitely share if I find anything that helps. I'd appreciate it if you would share if you find anything that helps. My doctor is working on getting me into see a headache specialist. Hopefully something will come of that. I'll let you know 😊

Onthemove1971
Onthemove1971
in reply to Rin9

Yeah! That is huge, hope they approve you!

Take care, days will come your way that are headace free, soon...

Is it anything linked to: arizonapain.com/trigeminal-...

Rin9
Rin9
in reply to Batty1290

Thank you for replying. I checked the link and no that any be what I have. I really appreciate you posting it for me though. 😊