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Daily Persistent Headache
Hi, and thank you so much in advance for reading this. I was a previously headache-free young adult until I got a sudden-onset headache on Dec. 3, 1999. Since then my headache has ranged in severity but is always there 24 hours a day/7 days a week. There was nothing unusual going on then. I have been on numerous medications with no result. The doctors have termed this New Daily Persistent Headache or a Post-viral Headache, since my blood work showed that I probably had mono. My headache is worse when lying down, with mild exertion, and less sleep. I also have fatigue with it. It is global, bilateral, and a pressure or burning sensation, although it varies some. Also my blood pressure has been lower since the onset of the headache, and my body seems to have more trouble regulating it. In other words, when I stand up it will go black, my head pain will increase, and within a minute or two, the world will come back into focus and the pain will go back to what it was initially. Therefore when doctors take my blood pressure after standing for a few minutes, it has had time to normalize to what it is when I am lying down. To sum this up, my headache temporarily gets worse when I stand up (only if I get a little dizzy
and it goes semi-black), but is worse the entire time that I am lying down or exercising. Could my blood pressure be
related, and if so what kind of doctor would I see? All tests are normal including MRI, MRA, lp, and eeg. My opening CSF pressure was a 9 with normal being 10-20, but that doesn't explain a headache beign worse when lying down. The only other
health problems I have are severe raynauds, primarily set off by the cold, and a positive ANA, both of which I had at least 5 years before the onset of this headache. I have had other regular tests for autoimmune problems such as lupus, and they are normal. If have If you have any information on prognosis or specific medicines to try for my specific headache, I would
greatly appreciate it, even including dosages, although I only weigh around 95, so that might be a consideration. I heard that the Cleveland Clinic treats this rare headache disorder.
Thanks,
Julie
and it goes semi-black), but is worse the entire time that I am lying down or exercising. Could my blood pressure be
related, and if so what kind of doctor would I see? All tests are normal including MRI, MRA, lp, and eeg. My opening CSF pressure was a 9 with normal being 10-20, but that doesn't explain a headache beign worse when lying down. The only other
health problems I have are severe raynauds, primarily set off by the cold, and a positive ANA, both of which I had at least 5 years before the onset of this headache. I have had other regular tests for autoimmune problems such as lupus, and they are normal. If have If you have any information on prognosis or specific medicines to try for my specific headache, I would
greatly appreciate it, even including dosages, although I only weigh around 95, so that might be a consideration. I heard that the Cleveland Clinic treats this rare headache disorder.
Thanks,
Julie
A related discussion, daily Persistent Headache was started.
I am new to researching information on the internet and obviously new to posting comments but I think that I can probably benefit from those of you who experience or diagnose headaches.
My husband is 32 years old, 5 days ago we found ourselves in the emergency room because in the middle of the night he was awaken by an extreme headache. One that he described as "hundreds of tiny rockets going off in his head". He could hardly move and the sound of his own voice intensified the pain. When we got to the hospital we described his headache. He was checked for blood on the brain through a catscan, when that test came back negative they suggested a spinal tap to check for blood in the fluid. Meanwhile, they had given him an injection of Demarol which got rid the pain. After talking my husband into the spinal tap because we would end up leaving not knowing why the headache happened they proceeded with the spinal.
That test came back negative although the doctor made the comment that the pressure was kind of high. She said that they had tested it for blood and spinal menengitis. They released us and told us that we should follow up with our doctor if it continued. We did. They prescibed him with two different medications, Imitrex Nasal Spray and Butalbital/apap/caffeine.
It is now Thursday and the pain has not gone away. We went to the doctor again today and was prescribed Ibuprofen as they feel that he is suffering from migraines. He has never had migraines before. She suggested that if the pain persists we should go to the emergency room.
I am completely frustrated. I suggested that they draw blood and run it through various testing. I explained that his cousin had brain surgery because due to genetics his brain stem was too short and because of football injuries it caused severe headaches. The name of what he had sounds something like Arnoldskieria?? He had a couple of brain surgeries and was cured. I dont know what else to do? Any suggestions????
My husband is 32 years old, 5 days ago we found ourselves in the emergency room because in the middle of the night he was awaken by an extreme headache. One that he described as "hundreds of tiny rockets going off in his head". He could hardly move and the sound of his own voice intensified the pain. When we got to the hospital we described his headache. He was checked for blood on the brain through a catscan, when that test came back negative they suggested a spinal tap to check for blood in the fluid. Meanwhile, they had given him an injection of Demarol which got rid the pain. After talking my husband into the spinal tap because we would end up leaving not knowing why the headache happened they proceeded with the spinal.
That test came back negative although the doctor made the comment that the pressure was kind of high. She said that they had tested it for blood and spinal menengitis. They released us and told us that we should follow up with our doctor if it continued. We did. They prescibed him with two different medications, Imitrex Nasal Spray and Butalbital/apap/caffeine.
It is now Thursday and the pain has not gone away. We went to the doctor again today and was prescribed Ibuprofen as they feel that he is suffering from migraines. He has never had migraines before. She suggested that if the pain persists we should go to the emergency room.
I am completely frustrated. I suggested that they draw blood and run it through various testing. I explained that his cousin had brain surgery because due to genetics his brain stem was too short and because of football injuries it caused severe headaches. The name of what he had sounds something like Arnoldskieria?? He had a couple of brain surgeries and was cured. I dont know what else to do? Any suggestions????
hi everyone,
My husband has chronic headachs and dizziness everyday. I took him to numerous drs and didnt get any answers.
A nurologist diagnosed him with spasticity. When I asked nurologist what caused spasticity he said he didnt know. I also paid out of my own pocket because my ins wouldnt pay to take him to a nuero-phsycologist for testing. He was diagnosed with Cerebrovascular Disorder. It was caused from lack of oxygen to his brain. I took him to an ER when he suffered from angina. I gave my husband 2 nitro pills on the way to hospital. When we got to hospital the er dr gave him 2 nitro pills. He was only supposed to get 3 nitro pills. I informed dr i had gave him 2 pills and that pill he was about to give him would be 4th pill. My husbands blood pressure bottomed out. My husband had 2 MRI and 2 catscan both were normal. His brain damage was microscopic it didnt show on tests. Cerebrovascular disorder can be caused by medicine rapidly reducing his blood pressure. I just want to tell everyone dont give up hope and continue to search online as i did for answers. It took me 3 years to find out what was wrong with him. The sad part is nothing can be done to reverse his brain damage. Marlee
My husband has chronic headachs and dizziness everyday. I took him to numerous drs and didnt get any answers.
A nurologist diagnosed him with spasticity. When I asked nurologist what caused spasticity he said he didnt know. I also paid out of my own pocket because my ins wouldnt pay to take him to a nuero-phsycologist for testing. He was diagnosed with Cerebrovascular Disorder. It was caused from lack of oxygen to his brain. I took him to an ER when he suffered from angina. I gave my husband 2 nitro pills on the way to hospital. When we got to hospital the er dr gave him 2 nitro pills. He was only supposed to get 3 nitro pills. I informed dr i had gave him 2 pills and that pill he was about to give him would be 4th pill. My husbands blood pressure bottomed out. My husband had 2 MRI and 2 catscan both were normal. His brain damage was microscopic it didnt show on tests. Cerebrovascular disorder can be caused by medicine rapidly reducing his blood pressure. I just want to tell everyone dont give up hope and continue to search online as i did for answers. It took me 3 years to find out what was wrong with him. The sad part is nothing can be done to reverse his brain damage. Marlee
Hi Dee,
I'm so sorry that you too are at the mercy of doctors that are in a rut. Thats what I call it because I believe that they are surrounded by illness so much in their lives that they lose their sensitivity to individual cases. I have had breast discharge for over five years, way over. With it I have been having acute pain in my ribcage in the breast and now its spreading to my right side. Along with it I have had severe headaches which have become more severe and sharp for the last five months. I have been through at least 4 doctors and . They actually have gotten worse. I can actually feel lumps in my breast and under in my stomach near my ribcage that when I touch them the pain just shoots from that spot to my breast to my head where the pain is. What do my doctors say? Depression, Irritable bowel syndrome, stress and even say its because I'm overweight. I have gone from one doctor to the next who works in the same group only to have them say. I agree with that doctor. Without so much as an examination. I have the current doctor who has really been trying to help me. I've had CT scans, ultrasound, mamograms. you name it. But I have asked for an MRI of my head all the way to my pelvic to see if this will show anything and I was told. "We can't just give a patient any test they ask for", yes. I have been refused an MRI by six doctors with no logical answer except that its very expensive. I have since filed a complaint and requested to be referred out of this system to Stanford to be seen by a specialist. What I feel by my symptoms and knowing my own body. It feels like I have some kind of growth that has spread causing discharge and now over a period of almost 7-8 years has spread causing these headaches. The pain in both areas are exactly the same and are unbearable. So as you can see. (sorry for venting) I do know where your coming from. What I say to you is. DON'T GIVE UP. You are your only advocate. Everytime I get frustrated or sick and tired of being sick and tired I go to my bible and look up a scripture. Then I take a deep breath and say ok. I'm not giving up. I owe it to my daughter and myself to seek treatment for something that is obviously wrong. My point is that doctors are only humam. They go to school to learn, they too can make mistakes. Just NOT with our health so its up to us to take the initiative and do what we can to secure proper health care. Don't quit til you get to the bottom of it! Thats my new mantra. I pray and hope that your issues will get resolved. If you just need to burn off steam. I'm a good listener too and hey, I'm very sympathetic at this time so feel free to email me at ***@**** I know that I do appreciate this forum because I can at least talk about my health issues without getting a prescription for anti-depressants! :') At least not yet anyway!
I'm so sorry that you too are at the mercy of doctors that are in a rut. Thats what I call it because I believe that they are surrounded by illness so much in their lives that they lose their sensitivity to individual cases. I have had breast discharge for over five years, way over. With it I have been having acute pain in my ribcage in the breast and now its spreading to my right side. Along with it I have had severe headaches which have become more severe and sharp for the last five months. I have been through at least 4 doctors and . They actually have gotten worse. I can actually feel lumps in my breast and under in my stomach near my ribcage that when I touch them the pain just shoots from that spot to my breast to my head where the pain is. What do my doctors say? Depression, Irritable bowel syndrome, stress and even say its because I'm overweight. I have gone from one doctor to the next who works in the same group only to have them say. I agree with that doctor. Without so much as an examination. I have the current doctor who has really been trying to help me. I've had CT scans, ultrasound, mamograms. you name it. But I have asked for an MRI of my head all the way to my pelvic to see if this will show anything and I was told. "We can't just give a patient any test they ask for", yes. I have been refused an MRI by six doctors with no logical answer except that its very expensive. I have since filed a complaint and requested to be referred out of this system to Stanford to be seen by a specialist. What I feel by my symptoms and knowing my own body. It feels like I have some kind of growth that has spread causing discharge and now over a period of almost 7-8 years has spread causing these headaches. The pain in both areas are exactly the same and are unbearable. So as you can see. (sorry for venting) I do know where your coming from. What I say to you is. DON'T GIVE UP. You are your only advocate. Everytime I get frustrated or sick and tired of being sick and tired I go to my bible and look up a scripture. Then I take a deep breath and say ok. I'm not giving up. I owe it to my daughter and myself to seek treatment for something that is obviously wrong. My point is that doctors are only humam. They go to school to learn, they too can make mistakes. Just NOT with our health so its up to us to take the initiative and do what we can to secure proper health care. Don't quit til you get to the bottom of it! Thats my new mantra. I pray and hope that your issues will get resolved. If you just need to burn off steam. I'm a good listener too and hey, I'm very sympathetic at this time so feel free to email me at ***@**** I know that I do appreciate this forum because I can at least talk about my health issues without getting a prescription for anti-depressants! :') At least not yet anyway!
hi everyone. neddie was yours a sudden-onset headache? since 1988 is a long time. i hope that the nerve block works. where is your headache located? where is everyone else's headache located? was anyone's sudden onset, or over a few days, or after a virus?
feel good everyone,
julie
feel good everyone,
julie
Hi I've been having a similar problem except I've had mine every day since 1988. It gets worse with some things but it never goes away. My doctor wants to do a nerve block on the occipital nerve to see if I'm a candidate for a pacemaker type implant that will help block it on a regular basis. Have you heard of this? I start Monday and I'll see if after this long a time if they will go away.
I find distracting myself works alot in getting the headache to go away. I normally just grab a magazine and start reading, but not a book. I think too much with books ;)
Its pretty much only on a hard surface, but sometimes it can be any surface. For example, today at school I was resting my head against the back wall and I had a mild headache the rest of the day.
ledzep,
Thanks so much for your reply. Your headache symptoms do sound familiar, but you sure are lucky that you are pain-free most of the time. Have you found anything to help at all? Is it worse when you are lying down all of the time, or just when you are on a hard surface? It sounds like the latter. How long has this been going on?
Feel good,
Jchinit
kellyjo,
Thanks for the reply also. Did you have a rather sudden onset of your headache and does it last all of the time? Mine does, but also ranges in intensity. Unfortunately, I do not have much advice, since nothing has helped me. I'm assuming that you've tried massage, heat, and cold. I've also heard of the anti-convulsant drugs working, but so far they haven't for me. Let me know a little more detail, so I can tell how related our headaches are.
I hope you feel better soon,
Jchinit
Thanks so much for your reply. Your headache symptoms do sound familiar, but you sure are lucky that you are pain-free most of the time. Have you found anything to help at all? Is it worse when you are lying down all of the time, or just when you are on a hard surface? It sounds like the latter. How long has this been going on?
Feel good,
Jchinit
kellyjo,
Thanks for the reply also. Did you have a rather sudden onset of your headache and does it last all of the time? Mine does, but also ranges in intensity. Unfortunately, I do not have much advice, since nothing has helped me. I'm assuming that you've tried massage, heat, and cold. I've also heard of the anti-convulsant drugs working, but so far they haven't for me. Let me know a little more detail, so I can tell how related our headaches are.
I hope you feel better soon,
Jchinit
I have also had this problem. I am only 19 years old, and I am in the US Marine Corps, which means that I am very phisically fit and active. For the last month or so I've had severe pain in my head. I've visited our medical clinic MANY times. The only thing they did for me was to try a lot of drugs(from IMITREX to Midrin to Depakote and every pain killer there is)then pass me off to a local Neurologist. I've had an MRI, a EEG,(all negative) and next is a Spinal Tap. This is all getting to be too stressful for me. I have a 2 year old son to raise, and my fiance can't do it alone. I can definately sympathize with you. At times these H/A s escalate to migraine type headaches, and I'd much rather die than suffer through this, but I'm a fighter and I'm going to do this for my family. Any suggestions
I kindof have something like you're describing, just in some parts. My headache is worse when I lie my head down on a hard surface. When I get up from sitting down for a long time, I can feel beating in the back of my head right between the two muscle humps that connect to the back of my head. It goes away after 30 secs to 1 min. I can also feel the beating when I start running, but it goes away. It doesn't hurt 90% of the time, it only hurts when I'm moving my head alot, like running. Also when I get up from sitting down for a long time my vision goes half black but returns in a matter of seconds. But I think thats normal.
Sorry to hear about your headaches. The clinic does have a comprehensive headaches center and if you wish a consultation your doctor could call 1 216 444 5559 for an appointment. The HA you descibe does sound unusual but I'm glad to hear that all the tests have been normal. When we see patients with chronic daily HA rebound from certain medications becomes a problem so your doctor should go through all your medication (rx and OTC) with care. The symptoms with getting up quickely have a pre-syncope flair (not enough blood pressure). You may consider seeing a cardiologists that deals with syncope. The HA overall are worse when you are lying down which speaks against a low pressure type HA which is better lying down. Your LP pressure, however was not elevated at all?. Patients can develop HA after a viral illness. The HA duration seems too long at this time for that. The rheum problems speak against using the triptans (ie imitrex). The HA groups have been using several of the anti seizure medications with some success in these cases (not because you are having sz). Sounds like a HA consult is in order. Good luck, gs
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