Yeah sorry I did mean Memantine. Thanks for the info!
Indomethacin(50mg) should break it down just enough to get you through the night without the biblical eyeball pain. I take it with yogurt before bed. 1/2(1mg) Clonazepam tab helps me eliminate the stress of stressing to have a good night sleep. I was waken up on an Ambien but; its not for stress.
Ambien didn't help me either.
My husband has just had 5 in 24h. That hasn't happened for a couple of months now. Very scary. Those Zomig sprays really save his life. I dont worry about that as much anymore. Good luck to all of you, i've never seen anything worse.
Will do for sure. I'll try to go back to bed. That pain wakes me up every so hour.
Know the feeling was awake every hour in the night so it's gonna be a long day today in the uk lol. Hope u get some sleep
If you are talking about the ONS it's probably the National hospital of neurology and neurosurgery, the national migraine centre doesn't offer surgery. the NHNN however is amazing a well worth going to, though they will make you try everything before you are offered ONS, so even if it feels like you have tried all of the drugs they may make you try some that you have missed before you try ONS because they have access to some even rarer ones. Also a lot of people on http://www.ouch.org.uk have tried gamma core, so may be worth looking at their forum too, I've been offered it but there's only a few trial units floating around my hospital. Good luck, hopefully you'll be seen quicker, I know that their waiting lists have been coming down!
I am in the same situation as you Heather but I am still trying to locate another doctor who would be interested to take a challenge with my case. I can not accept that I am «so special» as they say.
In our case special is not a good thing lol
Acceptance of the reality of our situation is really hard, and there are several stages of getting to acceptance... one of which is believing there is no hope. I think it's normal to go in and out of this stage, according to how your pain levels are, and how you handle them at the time. I still experience periods of hopelessness, after 30 years of this. But when I come through it, I find some spark of ambition once again for finding relief, and get motivated to seek out someone or something new to help me move towards that goal. The instinct to survive is the strongest one we humans possess, and it will always win out in the end, given a chance. Sending virtual hugs to you, Heather Bryant!
hell its not fair for us people -normal people have no idea how lucky they are hope you have some Oxygen and a sumatriptain injection the pain will in in severn mins he you got that
try standing on your head as soon as you feel the beast coming and stay on your head as long as you can at least 5 mins count slowly and stay up even when it seems useless it worked for me last winter after ten years of suuffering
Stay stong! We are all in this together
No prob, although I am considering documenting our journey with a web page also. Maybe when things settle down, and we have some relief. Yes, its throbbing 24/7, no let up. The only nerve testing that's been done is the nerve blocks. Since they work, that apparently is the diagnostic testing. We were very happy when we found they did provide relief, nothing else did. Hoping to have good news in DC soon.
Iris's headache began in August of last year, and was constant. Here’s how she describes her headache:
Towards the beginning of the headache it began as primarily back of the head, and worst on the left side The pain is sharp and throbbing, and is typically less severe at the start of the day, getting worst as it goes on. Ranging from 5-10 in intensity. Today it’s an 8. In September we received a tentative diagnosis of occipital neuralgia, and one nerve block on the left side. The pain eased up for maybe 12hs, and then the headache became more right sided for weeks. (We talked about a right sided block, but the neurologist struggled to find a trigger point on that side).
Over the months the pain moved up the head, becoming prominent on the top, and along the sides. Botox was tried, but was followed by intense needle like pain at touch on the scalp for two months.
Pain later developed into sharp sudden stabs in the front, above the eyes, on the temples, and sides. And occasionally sudden sharp ear pain.
A few weeks after an intensive PT and exercise centered pain rehab program, there began to be stranger problems: burning, and stabbing pain in the limbs, coming on for a few seconds and going, and electrical tingles along the spine triggered when sweating starts.
In the last months the head now experiences tingling “like a TENS unit”, that began, once again, left occipital region, as well as occasional numbness and sensitivity to touch along the sides of the face.
She’s also had a lot abdominal issues: Surgery to remove an over active gallbladder at age 9, many years of undiagnosed stomach pain, just recently treated for helio-pylori as well as a small intestine bacterial overgrowth. Alnd if that wasn't enough, was just diagnosed as fructose and lactose intolerant.
Xxxxxxx Yzzzzzz I am PMing you. Please check your messages and then "other"
I wish I could get to the point where I don't feel it defines me...I feel it does :( I'm so sorry you had to reach 7 years.
<3 to you
Thinking of you maribela! Your in my prayers. I am approaching 2 years and it seems like a lifetime. I can't imagine 7. God bless you and everyone else on this group. Strong people!!
Congratulations!! HUGE accomplishment that also gives so many others hope! No medication has changed my daughter's life for the better with dealing with 24/7 NDPH pain as well! You GO GIRL!!!!!
Congratulations! That is an enormous accomplishment, especially with your daily headaches. Working full-time too- that is really amazing!
Congratulations! Gives me hope!
Hang in there zoey! Prayers sent your way! Stay strong.
Kimberly I said the exact same thing to my parents and boyfriend. It is so hard for them not to ask but It's so hard to sound like a broken record for us.
Joëy, further to your last note, can you inform us on the outcome of your visit to the E.R. I've been thinking of you frequently since then and would greatly appreciate an up date.
Hope the best comes oiut from all your efforts and trials Sian. You are for sure a strong person. Hope as well that one day you'll say "I remember when..."
Thanks guys, means a lot to have all of you guys support!
I had to go off oral contraceptives as well. So frustrating how complicated these stupid headaches make our lives.
If you like to read stuff that is interesting but easy that helps my daughter
Books on cd easier than reading and seems to make the miles go faster
Got back yesterday. Thanks for all the tips. Actually made it through the tough weekend with little pain ( head-wise anyways). Paying for it today, but still a great time :)
Xxxxxxx Yzzzzzz nope. not one bit. Doesn
doesn't do much for my CH at all. Great for back pain when needed.
Like Todd Pittard said it will not prevent them and I mentioned in another post that it works for lesser attacks up to about a 5 r so but sumatriptan is the only thing that works for the really bad ones for me so I can save my sumatriptan for the worst ones
enbee on md junction ndph forum still posts and her headaches went down big time while pg and she is doing well now also. Check that out.
For me the headaches would get worse in the first trimester, improve in the second, then gradually increase again in the third. I even had a headache free period during the second trimester with my first child, but wasn't so lucky when I was pregnant with my twins. I found after I gave birth the headaches would spike a bit but then settle and breast feeding actually seemed to keep them at a lower intensity. I probably have a component of menstrual migraine though.
Mine was great! Lowest pain days ever. I was kept on all My meds and was treated as a high risk, everything went fine and my son will be five in aug. you will have to be monitored more closely but as it was said before everyone is different. Good luck and keep us posted
Caleb I've been on 20mg of Celexa for years for the same issue. I used to be so depressed I'd skip classes, and there were times where I wouldn't go to work for a week. I found getting into a regular schedule (including waking up early and going to bed on time) help A LOT with this.
I was in a Fibromyalgia study. There are many similarities between NDPH and Fibro. Sleep issues was one of the topics. They suggest going to bed at the same time every night. Your room should be cool and dark. When they say "dark" they mean no illuminated clocks, no night lights, etc. I didn't think it would have a big effect, but it really did.
I haven't slept well since the pain started. My body is over productin melatonin and that causes me to wake up many times during the night and to have crazy dreams. I mostly live on a schedule as far as having a go to bed time and a get up time. I'm having a really hard time of staying asleep right now. I hope you can figure something out.