trice125 Posted September 30, 2013 Report Share Posted September 30, 2013 Anyone else on this forum fight against with regular headaches? If so, have you found anything that helps them? Quote Link to comment Share on other sites More sharing options...
Katybug Posted September 30, 2013 Report Share Posted September 30, 2013 When you say regular do you mean non migraine or do you mean on a regular frequent basis? Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 30, 2013 Report Share Posted September 30, 2013 Have you checked yourself for Chiari malformation? This gives terrible headaches and pots. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted September 30, 2013 Report Share Posted September 30, 2013 I used to have headaches when I was on florinef. They went away as soon as I discontinued it. Any meds you're on that might cause this?I still get headaches every now and then, but usually tylenol or advil help me; also for the more stubborn ones I take tylenol # 3 and I recently got a prescription for demerol. (I don't really associate my headaches with my dysautonomia).Alex Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 30, 2013 Report Share Posted September 30, 2013 I had headaches everyday for years- sometimes migraines with aura or vision loss.I remember where I was when I realized my headache was gone. I hope that happens for you!!!I don't know what made them go away but I will share with you a few things that I believe helped.1) a better handle on my pots ( low dose beta blocker, compression, salt and fluids)2) I also get sinus headaches spring and fall. I'm quick to treat them and also try to prevent them by using a nasal rinse. If you have allergies I cannot say enough good things about neilmed sinus rinse. My children play sports and they also have seen a benefit.3)for me getting sleep means medications. I'm not happy about more medications but sleep is so important. Especially with headaches4) I am 100% gluten free. It's not for everyone but it has helped me in many ways. I also have to stay on top of my vitamin d and nutrition in general. I choose my food baised on nutrition. I eat oysters, kale, beets, eggs, etc- foods I actually don't like but I know they are good for me.. I'm sorry that you are dealing with headache pain. It's rare for me now, but I haven't forgotten how hard it can be, Quote Link to comment Share on other sites More sharing options...
Portland Bedhead Posted September 30, 2013 Report Share Posted September 30, 2013 TERRIBLE headache and stiff neck 24/7 for the past month! Nothing's helped so far, not even Norcos. But because my adrenaline surges have also started back up, I decided to get off the Florinef and Adderall to see if it helps any of my symptoms. I'm on day 2 of no meds, but so far, no change. Will be talking to my dr about looking into possible Chiari Malformation because in the past month, I've gone downhill fast and now need a walker and wheelchair. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 30, 2013 Report Share Posted September 30, 2013 TERRIBLE headache and stiff neck 24/7 for the past month! Nothing's helped so far, not even Norcos. But because my adrenaline surges have also started back up, I decided to get off the Florinef and Adderall to see if it helps any of my symptoms. I'm on day 2 of no meds, but so far, no change. Will be talking to my dr about looking into possible Chiari Malformation because in the past month, I've gone downhill fast and now need a walker and wheelchair.Holy moly! You need to get that brain checked Bedhed! Quote Link to comment Share on other sites More sharing options...
Portland Bedhead Posted September 30, 2013 Report Share Posted September 30, 2013 Been trying for weeks now, Hanice. My neuro hasn't returned my email about it yet. On the cancelation list for my PCP. Every day of waiting feels like weeks... Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 30, 2013 Report Share Posted September 30, 2013 Maybe you need to call him instead? Tomorrow is Monday! Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 30, 2013 Report Share Posted September 30, 2013 . Quote Link to comment Share on other sites More sharing options...
Portland Bedhead Posted September 30, 2013 Report Share Posted September 30, 2013 Thanks for the nudge, Hanice. I think I will. I have a tendency towards sometimes not being assertive with my drs, even when things get really bad, because I fear being labeled a 'difficult patient', but honestly, I need to speak up now and be seen asap. Thanks again. Quote Link to comment Share on other sites More sharing options...
Guest Hanice Posted September 30, 2013 Report Share Posted September 30, 2013 Thanks for the nudge, Hanice. I think I will. I have a tendency towards sometimes not being assertive with my drs, even when things get really bad, because I fear being labeled a 'difficult patient', but honestly, I need to speak up now and be seen asap. Thanks again.Thats good to hear! Update us! Quote Link to comment Share on other sites More sharing options...
Cala Posted September 30, 2013 Report Share Posted September 30, 2013 Headaches...now that's a topic I sadly am very used to. As a matter of fact that's the first thing that started me on the road to my diagnosis of Dysautonomia and my neuropathy.I've got them "somewhat" under control now but they are still very much a part of my day to day life as I have to be wary of the triggers that can snap them out quickly and render me senseless and sometimes unconscious.I take Imitrex 100mg tablets when I get one that takes me down hard and I have 6mg injections that I use when I either can't keep the tablet down or the digestive system is in "abrupt stop" mode and it's not moving at all. (Let me warn you, these shots HURT, not the needle but the medicine in the muscle will make you cry) These work amazing for the most part for me but they do come with a list 3 miles long of warnings as do most triptan drugs and you can't use them too often because they will start to cause rebound headaches that are prolly worse than the originals :-( Secondly I take Topamax 100mg a day. 50 in the morning and 50 at night. I tried just 50 a day but that dosage made me mean LOL I like to think of it as just being outspoken but that's just putting it mildly. I honestly was a real B on the witch. This medicine will make you stupid. Forgetful, dumb as a box of rocks. SO if you take it, don't think your symptoms are getting worse and your getting brain damage LOL your not. It's just the medicine and it's not permanent. It does work for the daily constant headache I seem to have always had and didn't realize till it went away. And it made the triggers less potent, less sharp to me. (something to be said about being dumb here LOL) but it works :-) Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 30, 2013 Report Share Posted September 30, 2013 Sorry about the headaches. My son deals with a daily persistent headache. I was researching the other day about inflammation of the brain. Which is part of PANDAS. Do you take any omega 3 oils? Like fish oil? Omega 3 are anti-inflammatory oils. These oils help calm down inflammation. If you take omega 6 oils with them, you cancel their help. My son does take a fish oil supplement but probably not enough to help with his inflammation. There are studies on fish that help with inflammation. The forum that I visited was discussing this supplement. Parents were putting their PANDAS children on high dosages of fish oil. The high dosages were helping with the inflammation. My son takes 2400mg of fish oil right now. However, after reading this information, I'm going to start raising my son's dosage weekly and see what happens. Fish oil is good for you and your body will let you know when you are getting too much. I'm hoping to see a difference in a few weeks.Rachel Quote Link to comment Share on other sites More sharing options...
Racer Posted September 30, 2013 Report Share Posted September 30, 2013 I am taking depakote twice a day that helps with headaches. The low doses of anti-seizure meds for migraines are not that bad. The side effects really start to take hold at the anti-seizure dosage levels Quote Link to comment Share on other sites More sharing options...
blueskies Posted September 30, 2013 Report Share Posted September 30, 2013 Yep, I have chronic daily migraine. Actually, 'bad balance' and migraines were my first symptoms of POTS. I've tried all the meds available for migraine prevention and struck out on all of them except for an older generation anti-histamine -- generic name 'cyproheptadine.' It doesn't help completely (although for a period of time it's all I needed to take and I had no migraines at all during that time) but I do believe I have less migraines with aura when I take it regularly. After years of suffering from migraine daily I was hospitalized for them about 6 years ago for a couple of weeks. I consulted with a host of specialists including my pots doc, a neurologist, and my now pain specialist. I now take opiates for the migraines -- which made my constipation problems (POTs induced) even more pronounced until some brilliant scientist mixed oxycontin with naloxone. It's called Targin here in Australia and I'm on a continuing dose (also need it for back pain following an operation for back pain (rolling eyes at the waste of time and money the back operation was as well as an old neck injury. the naloxone mixed with the oxycontin stops the opiates affecting the bowel. It's costly medication but well worth it for me. I've been able to keep my dosage low as well. I do this by putting up with getting more migraines than I would if I increased my dose but that's a road I don't want to go down yet. I want to keep my dosage low enough that addiction does not become a problem. I'm not recommending opiates. Just relating my experience to you. I had tried EVERY drug that migraine specialists have in their arsenal and only cyproheptadine helped -- somewhat. There is no way I would have been put on opiates unless I'd tried all the other preventatives and abortives first. Hope you have a neurologist who specializes in migraines. Not all neurologists do. blue Quote Link to comment Share on other sites More sharing options...
KareBear Posted October 1, 2013 Report Share Posted October 1, 2013 I dealt for years with chronic headaches and migraines that would last for days and tried different meds with no luck. After I was put on oxygen a few years ago I noticed it stopped the headaches, almost completely, I still get some minor ones at times but more than likely the ones I get now are sinus related and I dont get them often at all. I do stay on oxygen continuously but feel like just sleeping with the oxygen on at night is what stopped my severe headaches (because I was only on O2 when I slept when I first started O2 and that's when I first noticed a difference). Quote Link to comment Share on other sites More sharing options...
Iamcertain Posted October 3, 2013 Report Share Posted October 3, 2013 I used to get headaches and migraines daily that lasted hours but I rarely took ibprophen for them. I recommend keeping a log of when you got a headache, how long it lasted and severity. Show this to your doctor and they can determine whether or not you would be a good candidate for a preventative or something to treat a headache when it comes, or neither. I was started on amytriptyline 10mg and recently was increased to 20 mg, which has virtually eliminated my headaches. This is a small dose (I think). I am also taking magnesium and B2 supplements which are supposed to help with headaches, I'm not sure if they do or not. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted October 3, 2013 Report Share Posted October 3, 2013 Hi,Have you tried a low dose beta blocker -- inderal -- for a prevenative, or like another member suggested an anti-seizure med ( i used topamax) and lastly, antidepressents (like zoloft, etc).. and I've even tried Botox.Daily Magnesium Supplements help as well. Do you have a cause for your migraines? Quote Link to comment Share on other sites More sharing options...
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