til i take my last breathe
There are a few non profit making Charities already dedicated to the cause. One of the best is Ouchuk and the patron Professor Peter Godesby resides in USA. We all want to shout from the roof tops. Especially when we 1st get them as I think we are angry. The message is out there! and quite a few leading Neurologists who specialise in rare headache disorders are already fighting. So why not join an all ready up and running existing group who can help immediately, rather than trying to start anotherone? Ouchuk are 10 years established or more, and the entire board are sufferers!
i def feel u...i jst had surgery so am limitied...thank u soo.......soooo much for ur help/info and i will....i have a or the leading neurologist surgeon in mgh boston as my doc....talkin to him monday...lead me i will follow and and help any way poss to cure, find med get money w.e it takes til my dying breathe
Wish you the best Bill and relied is on the way.
I'm learning more about this MVP syndrome. Apparently it's not just about the mitral valve but a whole genetic syndrome which affects the sympathetic nervous system. Everything is starting to make sense. My adrenaline system is still pretty reved up and I'm pretty sure that's what's driving the headache. Waiting for that beta blocker to slow me down.
Took some benedryl last night so I could sleep. No headache this morning. Still feeling very reved up. Fighting off anxiety and tightness in the chest with lots of deep breathing so that I don't trigger another headache. Heart rate is down at least; hoping the beta blocker will take care of the anxiety too.
I'm 99% sure the Harry Potter Actor does them, so contacting him somehow or his publicist could be helpful. I wish everyone had such passion about fighting this (of course many of us do, that is for sure), but sometimes I guess we lose hope or submit to the false fact that we will live with the beast the rest of our lives and fight it until death. However, hope is powerful thing, and I think in time there will be more tools to fight it. I recently read a Dr. goadsby's new research and his asking for volunteers. I hope it goes well.
I AM GOING TO WIN ON IT...jst need some assistance
im doin my best
The positive side to these headaches is that has uncovered two hidden health issues that I might not have found out otherwise. (MVP and hemochromatosis). @Sarah- I was taking only 10mg of propranolol and was having problems with fatigue and borderline low bp. 160mg would surely kill me. @Michel- I guess if I find a cause, I no longer have a primary headache and no longer qualify for this group. I'll probably stick around; I've grown to like the people here.
Any chance this has caused your headache?
Both the hemochromatosis and MVP may contribute to the headaches.
Tracey, very easy to get oxygen on nhs. I've had it at home for about 3 years now. It is a bit of a mine field and you need to push hard with some of the GPs who are less familiar with CH. If all else fails there is a way to buy your own oxygen (welding O2) and its no different to what you get on prescription you will just need to source your own regulator, mask and refills. Prescription o2 is provided by Air Liquide who are great. Push hard and you will get it. In the mean time, get her to drink a couple of red bull energy drinks at the onset of a headache, I discovered this alternative thanks to this wonderful group and it has saved my bacon a few times especially when travelling. Not as good as o2 but hugely reduces pain. Hope this helps.
Thank you so much Andrew Szolga. I will push for it and all this info is helping so much. So glad I found this group Manuel Lara. I will definately try the Red Bull as well.
I just realised my contradiction, I said it was easy to get it on the NHS and then said it was a minefield...I was trying to say that it's easy if you are dealing with a GP who understands CH, you can have your o2 within 24 hours of them faxing the prescription to Air Liquide. It's only a minefield if you have to educate and convince your GP.
Yes, same thing happened to me yesterday....how foolish was I to think I may be on the road to recovery..it stormed back after a stressful finale of Dexter...I am thinking the weather cooling off here in Los Angeles that the headache may be residing a bit
afraid I've not been able to identify anything different in any of my regimes..........a mystery!!
Mine always hurts the most when I'm laying down/when I wake up. Obviously people experience different symptoms, but it's weird that we can be diagnosed with the same thing without any scientific backing. Just a bs diagnosis that will never mean anything IMO
They hit a nerve bundle during my LP/ CSF study and I had pain down my leg for a little over a week but it healed on its own with rest. Did you headache change at all? Had they already looked at your opening pressure reading prior to this?
I'm so sorry Sarah. How are you doing today? What are they saying about this? Hugs
Hi not good today, feeling very down :( hospital rang to see how I was and didn't really suggest anything other than to take tramadol and go and visit my GP. Have been avoiding both the super strong meds and the GP since I have been seeing the neuro. Know I need to learn to live with this pain just don't know how right now. As for my back and hip it hasn't settled yet but I am thinking it is just temporary
As noticed in recent comments, stress in a frequent major cause. With your job and the courses Hannah, I see it to be easily the main thing that can trigger the intensity oh your headache. For sure, you are a person that knows how to relax, breath to relax. Do you have time for any social activities.
I'm more of an introvert so I'm not the one to party. I do spend lots of time with my family but little time outside work with my friends.
I gather that you have tight family where love bounds each one, ; because when you live with ndph you need love around you in order to mange to survive with thiis constant chronic pain.
I am sending my love to you, every moment.
Stephanie you are very fortunate and your gratitude and words are beautiful to see. I pray every day that all of us can look past our pain and try to enjoy the good things we have.
I agree with your post Stephanie. However some of us only depend on this group or groups like this for support because we dont have family support for whatever reason and then there's comments like Kimberly made that make ppl feel like the group is not here for you to express your feelings rather good or bad and for support and then ppl leave the group who might really need the support and also there's something negative said about them leaving the group or not posting. SMH
well feel free to tell people about your experience and tell them to search the name on youtube, but I prefer not to post vids that have the same title. I skimmed through the vid, coulnt watch whole hour and half.
fair enuff no disrespect if u took it tht way jst inspired me...jst lost everything i had in my life 2 days after surgerey...so figured maybe the vid could help inspire ppl....nuttin to do with ch.....but...ima get a cure....somehow some way....i believe this is why im alive...message me sometime talk to me ull see im jst tryin to help
been thru alot for a youngin
see o2 makes it worse for me...cold makes mine worse...although it does help me calm down so if i have it on not too long it helps in tht sense....calmer u r, can help not relieve buit...i dnt know jst sorta helps alil...mine were/are, hopoefully were it would take 2 or more iv dilaudid(7 times stronger thn morpine) jst for relief
TN is different but many have both. There are also other types of TAC headaches. I have SUNCT along with secondary daily headaches. There is nothing that the mainstream Drs have found that works for SUNCT. I happen to have one that does not follow the mainstream. I have a supraorbital neurostimulator and take nasal Ketamine. It feels so good to be off of the Opiates after so many years. None of them really helped with the pain. They only helped me hide from it. Please feel free to PM if you have any questions. Most I will answer in the open forum though.
During a CH attack, the pain in the trigeminal nerve is excruciating - can't even touch it with a feather.
Yea I've several ppl tell me they have ch and just deal with it! Lol
For my husband its of course the cigarettes and alcohol. but we have noticed that some meds he used before during a cycle that worked are now triggering the headaches this time around. I agree with the spicy food and msg as well!!!!
My Ex wife!
Holy shit! Was this a neuro or pain management dr?? How often do u take it? Are you already on a high dose of pain meds prior to this?
A neuro. THat was some 7-8 years ago. I now take 60 mg of Metadol a day and that's it.
Yes Amber I already take about 300mg of oxycodon already, so with this new one its a time release and I take it twice a day and I take less oxys, so it's my pain Dr. which i'm a lucky one I have 2 Doctors that care about trying to help me not about the almighty $. But today was not to bad I came out of the dark and went outside it's been 5 days and that was to go to the dr, so keeping fingers crossed
Isn't there a song named "HURT" or "HURTS" ? It would be our Group's official song.
Sorry Wenda tried to sleep thru the nausea. I take Sumatriptan for migraine which I barely have. Propranolol, and Gabapentin and any thing OVC like tension headaches. But I actually liked the Maxalt better.
didn't the decompression surgery you had in 2009 help with or eradicate the problem?
Unfortunately, Chiari is one hell of an opponent. Some people never get better after surgery, others have symptoms spontaneously recur at some point in the future, and others do well for the remainder of their days. It is not well understood why this is the case. This patient population has been largely ignored since the condition was discovered in the late 1800s and research is severely lacking and outdated.
For me, I did quite well for more than a year after surgery. My symptoms began to recur 17-months post-op and really went downhill approximately 2.5 years after surgery.
If you're interested in learning more about me, Chiari, my daily health struggles, etc., I have a support page that you're welcome to like and/or subscribe to updates: www.facebook.com/TeamToniUpdates
My prayers are with you too Toni...I have read your page before and didn't not realize who I was chatting with...you are so strong to endure what you have and provide this type of support for others...stay strong..Thank you so much for your support!
Medicaid and Medicare Spending is slightly more than what we spend on defense. http://usbudgetalert.com/USBudgetCharts/fedBudget2 012.jpg
I am gladly surprised. Tks.
Bill, you are ABSOLUTELY CORRECT,!! It's disgusting to see all the pain n suffering...
when you feel an attack coming on stand on your head for ten minutes it worked for me last year , not started again yet this year but wont be long just hope it works this time round
I've not seen any food triggers. Though, you know... with all foods the body diverts resources to digestion, weakening everything else. I dunno, could be a connection. Good luck on your quest!
I'll try anything that works next season. Never tried the standing on the head thing, but I'll give it a try. However, you know the beast is different for everyone, what works one season doesn't work another, what works or me might not work for you, and what triggers a headache works the same way.
I actually have learned to meditate while having an attack. I doesn't make it go away, but does help. Better than just suffering. Hang in there Austin. We all put things off because of money and shear frustration.
Hi Dan the money part wasn't stopping me because i have medicare from being on disability from the service but my problem is when their gone you feel 1000% better and your easily distracted by not having a medical issue. But this time i'm following thru because towards the end of the cycle i was so worried about have a heart problem that i went ahead and got that monitor. My only hope is that this therapist will be able to write some referral to a specialist in my area if i have to I'll drive 500-1000 miles before the next one starts. As long as i know that tey will help and not be like the last one. Thanks Austin
i have it as a tat on my forearm
Happened to me with amitriptyline very similar heart rate in the 120 so they put me on another drug to counteract that blah blah blah ......I think butterbur is b complex plus magnesium ? All b vitamins make me so tired
Butterbur is an herb. I don't recall the active ingredient that helps with migraine prevention; it is something that relaxes the smooth muscles of the arteries. Never heard of B vitamins causing tiredness. I try not to take the mega doses of any vitamins.
Tried it with feverfew and magnesium. No help after two months. Just another combo to try, and well.....change to another
If it wasn't for my son i would of given or try to give him some head pain similar to mine but i really don't think one could inflect such pain on a person if one wanted to but i sure would love to try Perhaps some one will
I've seen a few that need to be humbled and several doctors who actually have compassion and hurt for me. Inch prefer the latter :)
But the part that amaze's me is that they think i had gone online and came up with these symptoms. But the fact is i would of had to been rich back in 1991 because as far as i recall the internet wasn't even really out their. I had joined a cluster forum back in 2000 and that was where i learned a lot of the triggers and became aware of what to avoid but back then they were bad but the breathing and low blood pressure wasn't a issue. Since they had first started back in 1991 i have been to literally hundred's of doctors some say they cluster headaches and some didn't know. But to be treated like this by complete idiot is amazing by it's self. When these started he was only 8 years old when i served int the service he was 2. But all the Dr i had seen it was only the older ones that had the right call in the diagnosis and 1 Dr at USC. IDFN anymore last night i fell asleep after i ate and sure enough i was awoken with a major CH and i didn't catch it in time and couldn't use the spray because my sinus was closed from the CH so i had to do a shot instead and that really scares me because of the raised BP and where i live in the country and it would take to long for a EMS to get here if anything did happen. And the more i think about it the more sick it makes me that these young Dr are even in practice he grad from med school in 2008. Now comes the funny part i got a call yesterday from my DR nurse and she read his recommendation that i have a underlying mental illness and that he recommends that i get a psych evaluation. But what the fuckin idiot doesn't know is that after that appointment i had told her that i'd like to see one because i'm having such a hard time in getting DR to believe me. If this had been before my son was born in 1997 i would of done something stupid but i can't. He should send my son a thank you card. This is the first time that this has gone beyond it's cycle they usely abate to the nightly ones only for a few days or a week after the daily ones and night ones but this is going on way to long now close to 4 months and the scary part is i was awoken with one on my left side and that had never happened before when they were on the right side the cycles are either on the left or right but never both with in cycle has that ever happened to any of you thanksAustin Gilsonn
A whole lot of money and no help with TMJ or head pain...
I'm having one made as you speak. Now I'm not feeling too confident that it will help. And I DO have TMJ. Been grinding my teeth since 18 and I'm 47 now.
The way I look at it, you never know. What doesn't work for one may work for another.....If this doesn't work for me, I can check it off the list. I have already had 5 root canal extractions that I have checked off the list....next
Hi Zoe. I found as a result of having NDPH I'm gluten intolerant. Never had an issue beforehand. Just one of the many 'add ons' I guess. I find I eat very 'cleanly', minimal processed foods, natural sugars like fruit etc and that helps with maintaining severity of headache 'spikes'. There are many food groups that can/ could be irritants too. I'd suggest working with a dietician, that was of good help :)
Thanks bec, I just thinks its worth a try to see if maybe I can try and reduce the severity of my headaches, I'm due an other MRI scan soon but seem to be having a lot more severe headaches recently so anything that can help is worth a shot
I have my doubts that a gluten free diet is useful unless you have Celiac disease. If you suspect you might have celiac, you want to get tested before you go on a gluten free diet. Anything is worth a try though.
yeh had them didn't work for me
the Lidocaine that worked the best for me was a muscle in the middle of my bask was in chronic spasm (twitching) and had been that way for 2 weeks when I finally went to the walk in clinic and I got the Dr to inject the muscle in 3 different places I was hoping for just 3 hrs of relief but the spasm never came back.
I have had it an an infusion a number of times. They worked for quite a while. Now they don't work