Keep building it up slowly, even at 50mg it didn't really help. I think I went up to 125mg but then settled on 75mg!x
I only take 10mg ATM, I've been on 100mg, I wouldn't say I ever found a huge relief but I cant sleep without it. I like just taking a small amount to help. I was told to up this a few months ago, but now we are trying to conceive it's not advised.
I hated the side effects the more I took & put on so much weight.
I have got some left to try Hannah Mahlo, but onoy the really severe ones. I stopped taking anything else about a year ago after a really bad reaction to one, I fainted & ended up in hospital for a week. I don't think anything has really helped me.
I want to give gabapentin another go and another one I've been on (can't remember the name, one that I've heard helps a lot of people) but my endometriosis is so severe, if I leave it many more years I won't be able to have children, so hoping that happens, then I'll start trying things again. Xx
My neuro wants me to try another nerve block so I've got one after Christmas, I reacted so badly last time though, had the worst migraine for 2 weeks straight & my neck was so tender & inflamed.
this happens to me quite often, sorry to hear you experienced this. but very big congrats on submitting your thesis thats a huge accomplishment!
Thank you everyone
Jennifer - is there anything you do to cope as a precaution when you're out? Cause errr, not to mention embarrassing, but totally debilitating just all of a sudden. Any advice would be great!
Barry...call your doctor, the hospital, your best friend, some one right now...get some one to take you to your doctor and explain your pain level..AGAIN..I'm sure...even to lessen it at this moment would be something.
Yes Barry--please hang in there and find a specialist who can give you new treatment options. It also helps me to connect with migraine friends when I am feeling hopeless for inspiration and encouragement. I am also curious about your hi-flow oxygen therapy if you wouldn't mind sharing details.
There is always hope. Really. Hang in there. I have found some relief with neurontin.
Thanks, Linda. He did try an anti-depressant even though he wasn't depressed, but it didn't help. In fact, he thinks it made him irritable and didn't do anything for the pain. He's also taken an anxiety med, and several other meds in hopes they'd work as preventives. Also, no abortives have worked and the neuro doesn't think Lyrica or gabapentin will work. He was having a lot of trouble falling asleep, but that's gotten a lot better. He hated the TENS unit. He was doing neurofeedback, but after a while couldn't tolerate it. I'm thinking maybe it was central sensitization. That may have settled down a bit now, but he doesn't want to go back. Heat and ice don't help. He had occipital nerve blocks which only took away the pain for four hours. The pain, when it wasn't constant, used to start from the occipital area and spread around from both sides to the front. It doesn't hurt at the top of the head. He says the pain is steady and feels like it is a pressure trying to get out of his head. He doesn't have any migraines symptoms that aren't common to other severe headaches. He sometimes get nauseous and he's sensitive to loud or unpleasant noises. He can't even stand to do his PT stretches any more. I'm hoping to get him to do some exercise besides short walks soon, but I don't want to push him too hard.
Oh my gosh it sounds like he has been through most everything and I can understand that. I wouldn't be able to get out of bed if it wasn't for the pain medication I now take after I exhausted everything else. I still spend much of my time reclining in the living room or in my bed. You have probably already thought of this too but it is important for me to have a good pillow. I have been thru every pillow out there and am still not sure I have found the right one and replace them often. I have been using down type pillows but without feathers as I am allergic to them. I like them to be very cloud like and fluffy. I recently upgraded to a king size and get it just right wrapping around my neck and upper back. I sleep on my side. My husband and I are also thinking about buying the tempurpedic cloud mattress with the adjustable base to raise and lower head and legs. I spend so much time reclining so I would rather do it in a comfy bed. Both my mom and daughter have them so I have tried it out. They are very pricey though. I wish I could come up with something else to help him and am so sorry your son has these problems! I wouldn't wish it on anyone as it is so painful and exhausting!
Thanks, Linda. Thankfully since I've been homeschooling Stephen he's rarely stuck in bed or the couch. We believe the stress of being in school with severe pain was too much for him. We're trying to find out if surgery is likely to help him.
I'll start. My headaches started three years ago when I walked into a steel beam. It took about a year of seeing many specialists to diagnose me with cervicogenic headaches. An MRI revealed arthritis and bone spurs, and the theory is that the head injury caused whiplash that set everything off. I have "facet syndrome" where nerves sending pain signals to the head
I had a really bad case of Lyme disease about 21 years ago that went untreated for a long time. It caused migratory arthritis and hung out in my neck for a long time. My theory is that is what caused the arthritis, but who knows?
Here are the treatments I've done that have helped: cortisone shots in the joints, Botox in my upper neck and back of my head (these two only worked once, though, and never worked again). Also, I take Zanaflex every fours hours as a preventative. If I get a spike in pain anyway (and I'm at work and need to function) I'll help things along with percocet or vicodin).
Treatments that haven't worked: physical therapy (5 different practitioners), chiropractic (four different ones), acupuncture, cranial sacral therapy, myofacial release, massage. Meds that have failed: any OTC, topimax, skelaxin, flexeril.
I had rhyzotomies in April and again in October. The recovery for both was brutal and neither worked. I'm really bummed about that.
Right now I'm trying Neurontin, which seems to temp things down a bit because I'm still in post-rhyzotomy pain. I still take Zanaflex and Vicodin maybe once a day.
Xxxxxxx Yzzzzzz how did u get diagnosed and does anything help you??
Ronit BT, I was never diagnosed by a doctor ( only for fibromyalgia) but have been to multiple massage therapists who have confirmed it. I haven't found anything that has successfully helped, but I haven't seen a doctor yet either. There are several doctors in my area that do trigger point injections , where they inject directly into the muscle knot and then combine with massage therapy to help. I just haven't made any doctors appointments yet, but I really should.
Thank u. You sound so similar to me.
Melatonin has helped me greatly. I started taking it in the fall before bedtime. It has decreased the length of cycle and shadow pain. Few things have made such a difference. Melatonin, o2, triptans are life savers.
the body clock..regulated by the hypothalmis in the brain..has a direct relationship with clusters..that is why afternoon naps are not recomended, and jet lag can bring them on....good luck
Thanks alot guys :)
I'd definitely talk to your neuro/headache specialist about it. If you're having medication overuse headaches, it's only going to cause more problems :(
I know it is Miranda Gill, but I have no choice sometimes, my other health condition is so painful. X
I'm sure it's difficult balancing the two conditions and you have to determine which pain is easier to live with, which was one reason I suggested talking to your doctor. Treating the pain from your other condition may increase your headache pain, but you should make that decision with the fullest knowledge that you can have.
Take as many injections as it takes!. Ive taken up to 9 a day. Its probably not good but my doctor says "i understand you man, when it hits you, hit it back!"
Well it has been 24 hours since i took a imitrex so i am praying this cycle is over almost as its going on 8 weeks
OTCs - Melatonin, Coenzyme Q -10, d3-5000, triple magnesium complex (CVS brand), feverfew, and Benadryl ( I take this because a sudden release of histamine is a theoretical cause).
Prescription- O2 very early in the headache works 50/50 for me, then I rotate imitrex injections and migranal (dihydroergotamine - DHE) nasal spray. Too many imitrex injections can cause rebound headaches, which are even more miserable, prednisone, verapamil.
Avoid - physical exertion, overheating, fumes and strong smells, stress
drink plenty of water
Oh hun that's awful, and it was going so well with ur new diet. What do u thinks triggered them? Hope ur feeling bit better xx
I took my tramadol on sat, about 4 doses and lots of anti inflammatorys as my surgery for endometriosis hasn't worked and I was passing out due to the pain, so had no choice.
Regret it now though! I seem so sensitive to painkillers of any sort. It still isn't back to normal now, I was taking aspirin & triptans to help but think I need to go cold turkey. Xx
Sounds awful hun, glad it's a little better now. I'm sorry to hear about the surgery...what's next for u?xxx
How r u
Crappy Bill. Just getting over one that lasted more than two hours. Went to work late because of the same thing. How bout you? On tap for the nerve block?
Down to 1 at night n 1 during day but gotta tAke imatrex to get it to go away. Dr dont wanna do nerve block until nexy cycle which i hope is never
@ Bill Jones.... ask about dihydroergotamine. I rotate it with imitrex.
Amazing to see that out there. When I took my paramedic training in 2007 there was definitely now mention of cluster headaches. I've been working to educate my colleagues about migraines and al their different variants since I was diagnosed as chronic in 2010 and have started preparing a presentation on clusters now that I officially got that diagnosis last week. Gotta keep spreading the word and doing what we can to educate!
I get attacks like this from time to time too. Not often though.
I get them where they last one minute almost to the second and then im pain free for 15 seconds and they continue.. and continue... I have 15 seconds to breath and then almost like labor pains they start again, I find the onset of summer makes them worse.. and I would never go somewhere where it is hot for a holiday... the thought makes me cringe I am indoors alot when its hot.
Have you ever talked to a neurologist about those attacks??