New Daily Persistent Headache Support Group

Hello out there. I am suffering from a headache. I rarely ever had headaches. I am 56. In February I woke with a headache, it has never left. I have it all the time day and night, go to sleep with it wake with it. I had my vision checked, it is okay. Been to the doctors at the NHS and they are pretty not caring. They have prescribed me antibiotics, painkillers, valium and a drug called propranolol which made me very ill, none worked to take away my headache. Over the counter drugs do not help. I am not using caffeine, don't smoke or drink. I did get some relief from prednisone but that worked for a while then headache resurfaced. I am so afraid I will live with this the rest of my life and that is impossible. All I can do is barely cope with this tremedous pain which is in both temples like a vice grip and causing my teeth and scalp to hurt. Could this be New Daily Persistent Headache? Please any comments, suggestions are appreciated. Thank you!Elle

Hi and welcome.

It does sound like it could be NDPH. NDPH, is a diagnosis of exclusion though, so other things have to be ruled out. NOrmally doctors will need to do an MRI/CT and some blood work to rule out structural abnormalities and any other underlying causes. Your symptoms do sound quite typical of NDPH though. But, there is a lot of cross over with other conditions.

It is really hard to find a drug combination that works. The drugs you have mentioned are often prescribed but it is not unusual they haven't worked for you. Don't worry too much though, there are many many drugs that can be tried, so it is likely that there will be something out there that will work.

The most important question is, are you seeing a neurologist? Especially one that specialises in headaches? Finding a doctor that has an idea on where to start with treating this headache is the best thing to do.

Living with a constant headache is very difficult, most of us have struggled for years to come to terms with it. It does get easier though. Over time, most people find some medications that help and you get better at dealing with the pain. Many people do recover fully, so don't give up hope.

Everyone here is very friendly, so if you have any questions please ask.

Well, I am in Scotland on NHS and no I am waiting to see a neurologist but am told it could be as long as 6 months. This is the NHS and they are slow and reluctant in many cases especially now with our new PM. Directive to cut cost. My doctor only wants to give me pain killers which I do not want to be on and depression drugs. I am having my best day in weeks. Took 10mg prenisone and did ultra sound on my temples and forehead. I luckily own a little hand held ultra sound which is a wonderful thing to have. Thanks for info. Wish I could get some proper medical help.

I live in Scotland too! The waiting times for the NHS are ridiculous. My GP is only interested in pain killers and antidepressents so I just stopped going. I haven't seen my GP in about 6 months and I don't intend on going back. Useless.

Post edited by: Jess23, at: 06/22/2012 01:08 PM

Welcome! So sorry you aren't able to get in to see a headache specialist in a timely manner. Quite ridiculous. Maybe you can keep trying with whatever doctor you can get in with to see if they have some better suggestions. The more you can try or rule out early on, the better. Sounds like you have made some progress though. Its good to stay away from the pain killers at this stage as they can make the problem worse. However, antidepressants are one of the most commonly used meds to help headache (they call it a preventative). They have pain relieving properties.

Similarly, anti seizure meds are also commonly used for headache preventatives. Just because you take an anti depressant doesn't mean you are using it for depression (although it is actually common to have depression, anxiety, etc, with this type of chronic pain). There are very few headache preventatives that are FDA approved. Of those, none were actually developed for headache. Most of what we try will be off label. I'd reconsider the anti depressant to try to bring the headache down.

Prednisone should be used as a taper, ie. you take it for a short time in decreasing doses. Was your doctor clear with the instructions? It shouldn't be as needed. Steroids such as Prednisone and antibiotics are two good things to try to break the headache or at least bring it down a notch. There is commonly a lot of ups and downs with NDPH. I do think its very likely you have it, but of course there is a lot to rule out. Haven't heard of ultrasound for pain relief...hmm.

Can you just keep going into urgent care for the pain to have them escalate your referral? Sorry I'm not too familiar with the system. I live in the States, where unfortunately we have our own problems, such as medical costs being ridiculous and insurance plans cutting coverage each year. There are some things you can try on your own such as identifying if you have any environmental triggers (such as trying an elimination diet), but good medical treatment really helps.

If it was me, I would try the anti depressant. They can be helpful and they are safe. Worst case you get side effects and you stop it. I've seemed to have tolerated them pretty ok (haven't changed my mood or anything weird). One of the most commonly used ones is an older tricyclic med called Amitriptyline (Elavil). Its most common side effect is sedation, so its best taken at night. Hope to see you around here again soon. Hang in there! It gets better over time. It could go away on its own, you will learn to cope, and over time you will find what helps your pain. Best wishes.

thank you so much. Yes, Elavil is the drug suggested. I am to see my doctor in July and will go ahead with that. I only take 10mg of prednizone and if i stop the headache becomes unbearable which it was before the prenizone. No I cannot escalate my case. I went to the A & E twice in the past four months and they just offer aspirin which I am allergic to. The NHS has changed recently under directives from Parliment. It has never been that good. If you are lucky, you luck out but most don't. I have carpal tunnel, and cannot get the surgery whereas teenage girls are streamlined quickly into the NHS system for porno vigina surgery. Don't ask me why, it's the NHS and illogical. There are 10,000's of hard luck stories I have heard, read and researched here in UK. I had a friend who had parkinson's and it took the NHS two years to diagnois her which the systems where so clear and she kept begging them that she had it. The delay caused terrible problems short and long term.

I say a movie by Michael Moore called Sicko and he grossly misrepresented the NHS system in Britain. It and has been always a poor, a bit backward system based on where you live. Londoners get more progressive treatment whereas in northern England people do not. I am moving to the USA in October. I am American by birth but married british and lived her a long time, but hopefully I will be able to afford medicine in America, but don't know. Shame medicine is unavailable worldwide to so many. Sorry, don't mean to get off like that but I have been very frustrated with our system here. The ultra sound may be odd but it is helping. I use it for a back problem I have, bulging disc and it helps so I am that desperate to try but it is helping a bit. I will try the elavil. Thank you for caring to respond and suggest. I just cannot understand what brought this on. Never really had headaches. About pain pills. My doctor had me on 8 tramedal which is called ultram in USA for a year and it was destroying me as it is addictive. I taper off it last December and went through hell in withdrawal but no headaches, then one and half months after this constant headache came on and never left. wonder if there is any connection. Cheers!!! And Thanks again!!!

So the doctors have recommended taking the 10mg Prednisone daily? That isn't typical for headache (as usually they would give you a high dose taper pack infrequently), but for auto immune conditions, that would be a more typical treatment. Not saying they think you have an auto immune condition, but I am using that as an example of when I've heard of that. You might ask your doctor about taking 5mg twice a day rather than 10mg once a day, as I've read some folks find that more helpful.

I can't begin to understand your frustration with the system there so I can only say I'm sorry you have had to deal with that. I hope the more to the US helps you in that manner. Are you working? Typically those here with health insurance have it through their jobs, but some buy individual policies or are dependent upon the government (state or federal). Having a pre-existing condition will make it difficult to find someone willing to give you an affordable individual insurance policy. With a policy through work though, if you have had continuous coverage, they cannot deny coverage for any pre-existing conditions.

Therefore, you may want to set an individual policy before you come here even if it is very expensive, so that you can maintain continuous coverage. Otherwise, there may be a 6 month or longer wait after you would get added to a policy here such as through work, and often they have you wait at least a month before they offer your coverage. Here in the US, its mostly about how much money you have.

You often need to have gone to college to be able to have the skills for a job which would pay enough to offer affordable health care, and college takes money. Then, those of us who do make more end up paying for healthcare for those who can't afford it. No system seems ideal. I'm intrigued what will happen with healthcare reform here. I like some of the ideas, but it has to come at a cost (I don't believe that costs could remain the same, even with less folks being uninsured and ERs and such writing the costs off and increasing their prices to make up for it).

I think most of us here are in your shoes as far as the this came on all of a sudden without history--that is characteristic of NDPH. Some had headache conditions such as migraine before, but of course this is much different from what they were accustomed to. I don't know of Ultram or any similar meds triggering a headache.

I had heard some bad stuff about that med. Here some doctors prescribe it quite often it as its non-narcotic, but it can be just as addictive and can actually cause other types of health problems. A lot of us had our headache start at the same time as an illness, injury, trauma, etc, but a good amount just had it come on out of the blue. The Epstein Barr virus has been a known trigger for some folks for example. So even if it wasn't the med per se, something could have been going on in your system that triggered this. I think a good analogy is a switch for pain gets stuck in the on position with this headache.

Its very tough to turn the switch off, but we try to dim it down some so we can be more functional. Hopefully someday they make some advances and figure out what actually causes this type of headache. From what we know, there are likely several potential causes. Lyme is one. Auto immune seems to be another. Best wishes.

Thank you for all your thoughts. Well, I was back in Us in Oregon for a year in 2009. I am very nervous about the health care reform. I don't know what the answer is. Every system seems flawed. Perhaps just putting a cap on cost of medical procedures and medicine. Doctors are so wealthy. I know I have some in my family and they are obscenely rich. But that will never happen. Too bad health insurance ever started and over here the NHS. I believe I have to mainly be responsible for healing myself. the prednisone was because the doctor feared I had large cell artery or something because my syptoms matched that so much though the blood test was negative. She said sometimes the blood test can be negative and you can still have it and need a biop. She had me on 60mg a day and now 10mg. I would like to take nothing and work with relaxation and ultra sound which is very relaxing. I think my headache was triggered by stress maybe, yet I have been more stressed before and never had this. About the Epstein Barr virus, my doctor and I spoke about this but the problem is I had mono three times and glandular fever as a child so I would show it present and she said you develop an immunity. As a matter of fact the glandular fever was very similiar to this only my lymph nodes were swollen and it only lasted three weeks. Perhaps I have some virus and it will burn out. I plan to stop taking the pred and go cold turkey and see if I can master this. I see my doctor in July and if I am still bad I will go on Elival. Thank you again for helping me. I am excited about going home to Idaho, but worry about the economy as my husband will have to find a job. As for me, I worked until last autumn and due to my carpal tunnel I had to quit. I am seeing about hopefully getting the surgery here but so far they have denied it due to that is what they are doing now to cut cost.

you see we had to bail out the banks here and some european countries so things are real tight. Cheers.

I think your doctor might be talking about Giant Cell Arteritis? It sounds unlikely but stranger things have happened. Sorry to hear about how slow the NHS is. It does sound like the care is very hit and miss. We have several posters from the UK and they mostly all seem to have problems with finding a good doctor.

HOpefully your move to the US will be helpful for your treatment. I'm in Australia and my main knowledge of the US health system is through other posters in this group so I'm not sure I can offer much advice on the best way forward once you get to the US but other posters should be able to help you out if you have any questions.

Re the Elavil, it's actually a drug that can be useful in some people with this condition, so definitely give it a go. It can take awhile to work so don't give up if you don't see any improvement straight away.

Thank you! I am just a bit concerned about drugs like elavil because they make me sleep all the time. Which throws me into a depression. Strange thing about this headache, it not only hurts like a vice grip but makes me feel drugged up. Right now I am only taking my iron pills because I must. I am telling myself it will just one day all go away! My health has been going down hill for a while and I cannot understand as no one in my family has the same problem and I am the youngest. I have 3 bugling disc in lower spine which the NHS denies treatment, a leg that aches constantly which the nhs says is in my mind along with the back problems which were confirmed via mri as showing three bugling or herniated disc. And I have Carpal tunnel, denied surgery because they are cutting cost. I am not that old 57 and not over weight and use to walk 5 miles a day and cycle, now I am house bound though I refuse to take benefits. That would be failure. This headache interfers the most personally with my poetry and a book I am writing. Sometimes the answer seems only to be to end my life. Not feeling sorry for myself, but tired and worn out having an enemy body.

I don't drink or smoke though I admit I used to do very active things like ski and exercise jockey which problably have led to my numerous joint problems. Oh, well, getting old is hard to do. Thank you for your info. Being american I know what the medical system is like there, same as here, only for the weathly. It is hard to find a good doctor as too many people enter the field because of money. I use to work in vet med as a surgical tech and vets were the same. Too many in it for the money. Shame, we human always corrupt everything, every system. NIce to hear from some one in Australia. Wish I could see your great country, so vast, but alas, don't thing I ever will. Cheers!