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Help: does has anyone had bad headaches assoc. with herpes??

Discussion in 'Personal Experience with Herpes' started by christi, Mar 7, 2004.

  1. christi

    christi Member

    Hello everyone,

    I know I’m on here regularly answering posts and generally trying to be as positive as I can for those needing help with a herpes query. This time I’m actually writing to see if anyone can help me with something. In August of 1998 I caught a bad flu which was sweeping Australia and wound up in hospital with a high fever of 40C plus for several days. I was so sick. I had two weeks off work and during the second week of this flu I began being awoken from sleep, drenched (wet through) with sweat and with an excruciating headache which would only be relieved by sitting up. Any movement, breathing, coughing etc would cause the pain to surge beyond belief. This happened several days in a row and then as I got better from the flu I had it stopped. Six months later I caught a head cold and I began being awoken from sleep with the head pain again. By this time I had learnt from my last experience that as long as I sat still and perfectly upright it would gradually ease over about an hour or two. Again, when I got better from the cold the head pain also went away.

    It was two months later that I was diagnosed with herpes (type 2). I had had glands up in my groin on and off since that flu I had so I am a little suspicious that the herpes may have been in my system for a few months before I actually had the first outbreak.

    It is now five and a half years since I had those first episodes of morning head pain and nearly five years since I was diagnosed with herpes. Since then the head pain started happening independently of my having a cold or flu and strikes without warning at any time, awakening my from sleep and only easing if I sit perfectly still and upright. I have woken once from a general anaesthetic with it and have awoken after only one hour of sleep but it has never come on while I have been awake. It strikes every day for one to twenty (ish) days in a row and then suddenly goes away again.

    It doesn’t seem to be triggered by stress, my menstrual cycle, food, any of the things that would be of any significance (believe me I’ve tried everything). There seems to be no rhyme nor reason for it to happen. The doctors I have seen have ruled out cluster headache (a similar condition) and the pain I feel and describe is very different and 10 times worse than normal migraine (I have had normal migraine since I was five and for any other migraine sufferers out there the pain of migraine is excruciating).

    No one has ever been able to give me an answer. I am incapcitated at least 60 days per year with this weird head pain and can never predict when it will occur. All scans, including MRI have returned normal and the only answer the doctors have come up with is that I probably had some sort of meningitis/encephalitis when I had that flu in 1998 and it’s left some kind of damage.

    I have tried everything. I get depressed about it every now and then but have pretty much learnt to pick up where I left off when a head pain attack ends and carry on with my life. I am perfectly healthy otherwise and by looking at me, I am fit and attractive and there would be no way that anyone would be able to tell that I go through a private head pain hell for weeks at a time several times a year. Some times I would have had a herpes outbreak either before or after the onset of the head pain attack but it doesn’t happen every time.

    Has anyone ever heard of this type of thing. The only thing I can liken it to that the average person can identify with is: Have you ever had a headache brought on by being idle or sleeping in too long? If you take that headache and magnify it a million times, that is what wakes me out of sleep. Can any of you identify with this. Do you think it’s related to the herpes. I am on Famvir full time now and although it stops herpes outbreaks it hasn’t made a difference to the head pain.

    Please help, I try not to get desperate but sometimes it gets the better of me. I’ve only just recovered from a two week attack. My employer is not impressed (because I take so much time off work even though I am a diligent, hard worker), I feel like two weeks of my life have just disappeared once again and it actually takes me a little while to recover just from the trauma of having had this kind of pain.

    Anything you can recommend or suggest will be gratefully accepted.
    Thanks, Christi.
  2. perk

    perk Newbie

    Headaches and herpes

    Hi, I just read your post. It is four years old and I was wondering if you continue with this pattern.

    I was dx. with meningitis four years ago. Also tested positive with West Nile. I have had herpes for thirty years. I notice that I can't seem to get relief from the herpes for any long period of time.

    Then I get what I call "a lesser version of meningitis" which include a brutal headache, pain between should blades, flu like symptoms and always a scratchy eye. This scares me as it feels like same symptoms that put me in hospital. Always when I get these episodes I have some sort of itching in the vaginal area. I also have some tiny tears and sore spots but not real lesions. I am trying all sorts of homeopathic remedies to keep the herpes from recycling but am convinced even though doctors don't concur, that the herpes, epstein barr which I tested positive, headaches are all related. Anyone else out there in the same boat and could offer advice? Many thanks.
  3. MLA

    MLA Newbie

    Headaches and Herpes


    I just had the same headache you mentioned in your email last night. Kept me awake for 3 hours. Same symptoms, same remedy: sit upright and not move. The pain is behind my left eye and goes all the way to the base of my head. Throbbing pain worsened by exposure to light of movement!

    I've had the same type herpes as you do for the last 22 years. I do notice that I get the headache and most outbreaks during stressful times, about 3 days into my period, after being in the sun very long or whenever my inmune system is low. I don't always get the outbreak with the headache. Most times I know I will have the outbrake when my skin feels sensitive on my legs or arms.

    I take Acyclovyr as soon as I feel the headache/sensitivity setting in and it usually goes away the next day. If I wait too long the headache will stay for about 4-7 days and I will have an outbreak.

    Hope this helps!

  4. alaskagirl

    alaskagirl Newbie

    Hi I was reading through this thread of conversations about headaches and herpes. I find it so fasinating, I am new here as of this morning, due to desperatly searching internet looking for some info about herpes and headaches. My doctors do not believe either that the herpes and headaches are related, but I know better I have had genital herpes for 14 years and the precurser to each and every episode is a searing headache. Sometimes that lasts until well into the duration of the sore, I also know how bad my outbreak is going to be by the extent of the headache. For instance I have had 3 outbreaks in a row in the last 5 days, literally on top of the other, and yesterday I could not funtion due to the head pain.
    Down in my jaw around the back of neck and ecspecially across the front, yes it is exactly like a cluster head ache. Nothing can touch this pain either.
    Since I will have to live with this all my life and cannot take the meds for herpes they have out there (because they increase my head pain)
    I am on a mission to find out how at least help with all the side effects. (as if the virus is not bad all by itself.
    I was wondering have you suffered from headaches alot in the rest of your life?
    Definatly I will post ANY helpful news
    good luck
  5. DueSouth

    DueSouth Newbie


    Greetings, I would like to thank you all for your posts and attention regarding aspects of headache occurrences. I acquired herpes simplex meningitis when I was young while my immune system was in a decreased/underdeveloped state. I have had lesions of the eyebrow, in sinus cavities, and on temples. I also have many headaches which I can directly relate not only to the val/acyclovir but before intake to the herpes virus sensations. I have headaches that last sometimes up to 2 weeks of which I awake from and fall to sleep with; although, they will keep me from falling asleep at times though Im in the dark seeking the relief that can help. I also get the illness behind my eye the sensations along with the headaches come and go like the active irritated feeling of lesions. Please consider my additional recommendation to consume herpes anti-viral treatment at the onset of these headache symptoms which may be related. I say this as you may need try and refrain from taking Tylenol, Aspirin, or other similar anti-inflammatorial. I was recently hospitalized after standard consumption of OTC medications (primarily Tylenol!) for headaches. Though, I have always found relief with them - I was about 5 days into a headache out of town away from my medication and finally was unable to get relief taking them; instead symptoms became more severe after medicating. I finally was unable to talk or turn my head. After an ER doctor refused me any medication without 16 hours of tests and hospitalization I struggled to make it home (7 hours) and made it barely by clenching my hands next to each other and staring straight on the steering wheel - got there grabbed meds and went to the hospital. If this becomes a similar experience you may want to make sure they give you a MRI (for better resolution) not a CAT Scan BEFORE performing a lumbar puncture. This way they will see that you have fluid around your brain and will know or SHOULD know to use a pressure regulator on your lumbar. I had ER docs spray my spinal fluid across the room which caused me to loose precious protective fluid, hemorrhage, not be able to stand up, and be submitted to a 1 week hospital stay ... all the while not given an antiviral medication. Guess why!? herpes spinal fluid test was negative for it's presence. I doubt they got a good sample but, otherwise I think I had Reye's syndrome from the Tylenol which is chemically similar to aspirin and is now stated in wikipedia as also probably the syndrome. Nobody would begin to consider my extensive history being the cause nor would they give me one! I think I doctored myself (thank the decision to drive) from further viral damage and being more overcome by it from state I was left in as a result of foul work. I'm sad to be left to said that I've had to pay $15k in medical bills for a "migraine headache". I feel the neglect in the community on herpes was a tragedy for me in life. I'm doing much better with headaches now that I have grown and learned the reality of this condition. I have tested that indeed taking large doses of Lysine while eating food low in Arginine with medication will definitely relieve multi-day headaches quick and have me thinking and feeling very well. I don't think I need to ask you to please continue to conduct keen observations of your herpes condition. People seem to be needlessly ignorantly arrogant when it comes to the herpes virus. I have many cognitive symptoms before I have an episode sometimes weeks before. Whether it is cloudy thoughts, poor retention, reduced recall time or ability, or alarming sensations reminding you of headaches - I think you may be able to cue them to an occurrence even before irritation of an outbreak location. Finding this to be true and sharing it may allow its regard to become of an important concern to help a kid that I was. Hope I helped!
  6. Bearinmind

    Bearinmind Newbie


    I would say that 99% of the time that I end up having an outbreak, I get horrible headaches within a few days prior to the outbreak. Usually, they are shooting pains, like a lightening storm in my head and like some other people, the intensity of the headaches goes along with the intensity of the outbreak. Acyclovir helps if I start it as soon as the headaches start but it doesn't usually stop the outbreak, just speeds up the healing process. My headaches/outbreaks generally seem to be brought on by stress, especially if I have physically exhausted myself working in the yard. I have also noticed that certain partners I've been with I tended to have more outbreaks after rcving oral sex. One thing I noticed with one partner was that I ended up with less outbreaks if they brushed their teeth before we had sex. Another thing that seems to work it to put a thin coating of triple antibiotic gel on my penis before sex. I've not had any outbreaks after using the triple antibiotic gel.. My Dr's all tried to tell me that the headaches have nothing to do with the outbreak and to me, that's a flat out lie! I get the headache almost every single time, within a few days 2-3 usually, of the outbreak.. All I can say is that Dr's need to realize that many of us do get headaches and that we may have something else going on in our systems that needs attention.. Some of the headaches make me feel like I'm going to pass out, and that's NOT a fun feeling and only causes more stress, making the outbreak worse.

  7. BKK

    BKK Newbie


    Wow, I'm learning so much here that I thought I already knew. I've had herpes about 8 years. I've had migraines for 25 years. I know i have major mood swings prior to an outbreak. I turn into the bitch from hell, I'm usually pretty mellow so when that starts happening, I know its not me.

    I've never even thought of relating migraines to the herpes. I can't believe I never thought of it. I'm getting over a whitlow episode and fighting a monster 4 day headache.
  8. ntdc

    ntdc Well-Known Member

    both OHSV and GHSV cause headaches for me. OHSV causes facial pain which is extreme and constant causing a headache in the front of my head.

    GHSV break outs trigger a stiff neck and severe headache, nausea, and night sweating sometimes lasting a long time. Famvir relieves this within a few hours of taking it.
  9. headaches, cold sores and 'nervy' face

    Hi all - it's been great to realise that there are others who associate headaches and herpes! I posted the below post a few months ago (on a different part of the site), when I was more concerned about the tingling/senstive feeling I get on my face and eye but since then the headaches have been worse. Not as bad as some of yours sound, but they hang around my temples and eye and sometimes towards the back of my head, behind my ears. I now seem to be getting the headaches without any cold sore. Has anyone met a health practitioner who recognises and understands this link? Any advice welcomed!

    p.s. My GP wasn't much help - had never heard of Lysine and prescribed anti-virals which I haven't tried yet.

    Hi! I'm new to the forum and hoping someone can help, or share similar experiences... I've got a few things I'm interested in getting advice on (I've also made an appointment to see my GP).

    I have been getting cold sores all my life, but over the past couple of years (since I stopped taking the pill), I get them almost every menstrual cycle. It's usually a few days after my period... I know that hormones are a factor in causing cold cores, but I really don't want to live with a cold sore a month...

    I also get an uncomfortable, senstive or nervy feeling (it's the only way I can describe it) on my face. Always only half my face, and it's the same side I get cold sores on (right). Sometimes my right eye also gets sensitive and dry, and lately I've started getting a sensitive tooth, jaw-ache and sometimes headaches.

    But the strange thing is that lately I haven't been able to see the cold sore! It feels as though it is in my nose (which is where I've had them before - close to the bottom of my nose).

    I eat really well, avoid nuts and eggs (I thought eggs were bad but this site says they're good?) and generally have a healthy lifestyle.

    Has anyone else experienced any of the above? I'm most worried about the nervy face and headaches...

    Many thanks for reading this far!
  10. MeThree

    MeThree Newbie

    I get herpes headaches too. I've never taken any medication for the herps. My blister outbreaks are mild and occur maybe once a year, if that. The thing that does occur more often are the tingles in the legs, mosty the right one, and pressure build up inside my head. In regards to the headaches, the head pressure begins first and then my neck area becomes sore and my right eye becomes difficult to focus. The eye feels scratchy, becomes light sensitive, and seems to be sort of 'sticky'. The head pressure makes me feel tired, which then makes it more difficult to stay awake and concentrate on daily chores. No amount of coffee seems to help this tiredness. During these headache episodes, I take ibuprofen, which does help with neck ache, and I try to get plenty of sleep at night. The headaches usually last for about 2 or 3 days before I feel myself returning to normal and become fully alert and focused again. If I don't take ibuprofen, they last longer and the pressure builds up more.

    It has taken me a number of years to correlate my headaches with the herpes virus, but through experimenting and experience I know when to expect them. If I have somewhat rough sex, dry sex, prolonged sex, have sex multiple times in succession, or masturbate often, I can expect to either suffer the tingling sensation, the headache, or both (or an outbreak). If I am more gentle, stimulate my partner to be more wet before sex (I am male), not keep trying to orgasm when I know I won't, let a day pass before having sex again, and abstain from masturbating, I do not experience the tingling, the headaches, or an outbreak.

    When I first became aware that I had herpes and was going through my first outbreak, the herpes nerve pain began in my lower back and moved both down my legs into my feet and up my back into my head. I guess this happens with many people. If the pain can occasionally flair up in the lower extremities of the body, then it makes sense that it can occasionally flair up in the upper extremities too. In my experience of 12 years with herpes, it absolutely can cause headaches. Hopefully, my experience can help someone else.
  11. queennie4

    queennie4 Active Member

    Re: Herpes and headaches

    I also get headache but i thought it was from taking the medication "VALTREX" it come either when i have't taking the meds or a couple of days because I never had OB's or just the case being on the meds, I am confused sometimes too about Herpes and headaches or Meds. causing headaches, your not alone....
  12. robster

    robster Newbie

    I read the word herpes is is greek and the original meaning was to do with creeping. I think there are loads of different symptoms with herpes and like the greek meaning they creep through one by one.

    When i first got it is was a small rash on my knee, then few months later i got a blister on my penis, after that a rash on my inner thigh.

    Between these different out breaks i had pain in my jaw, that went and i had pain in my knees and thigh. Now i get twitching muscles.

    The different symptoms come and go and just seems there are so many it's crazy.

    Am always waiting for the next thing! hopefully things will calm down at some point. Checking through the different threads you see tons of different things and i think everyone is effected in different ways, Whenever something appears I just check this forum and sure enough some one else has had what i have had. Makes me feel a lot better to see this and share my expirences.

    Just hang in there and keep checking back when things are down
  13. regret

    regret Well-Known Member

    thats how i know im going to have an outbreak soon,,ill get a headache all of a sudden and it will last for 2 -3 days straight..just take extra strength tylenol, sometimes that will helpit and other times no...
  14. ALL of the post are correct that have associated the Headache with herpes.

    The headaches will come with or without a breakout.
    The First sign that the Headache is coming is you become irritable with a neck pain ( you cannot focus on anything).
    Your sinus mucas will become clear and then dry.
    When you wake up your eyes will be red and itchy, your face may also be itchy
    You will have a clamy, balmy feeling at the genetals
    The headache starts, you become very tired, but find it hard to lay down because of the headache
    The second day of the headache is very Bad and intense ( No medication will seem to work) You will experience nausia
    The third day is tollerable as the headache decreases( best decribes as a roller coaster up and down)
    You can read some and are not irritable
    After Day three you are close to being normal. ( about 95%)

    Medication: Tylenol Severe Alergy, Start taking your herpes meds ASAP. I just had a two day Headache !!!!! and will keep experimenting until I know more.
  15. darwin

    darwin Newbie


    This for the most part is me with the headaches and I have been treating them with pain killers.
    Lately the pain has started in my gums in two certain areas. I went to the doc and the doc specialist and found a blur on the screen but nothing more.

    When I push on this spot I can feel it in my temple and the pain is excruciating. It however does not go away when I like down or sit up and most meds dont work. I have had these tiny little blisters breaking out in certain areas of my arms where I have been scratching as they have been itchy!

    I am going to the GP tomorrow because I had a feeling finally that all this time it may have been the herpes and lately I have been through uber stress of being forced out of my home without anywhere to go. I go through sweats when I try to get done here and my blood pressure has been so out of control that I have been taking meds for that.

    Do you think this has to do with my herpes! I have had it 23 years and have been careful in my toilet...but lately just dont care anymore and scratching at bumps I know I should not be.

    I can always tell from a stiff neck, sore throat and BAD taste in my mouth. Before all this stress really in the last 15 years I never heard a peep out of it! Again OMG odness

    Darwin because it has to hit me on the head to kick in!
    Last edited: May 10, 2011
  16. Herpes effects the nervous system

    Anything with a nerve attached to can be effected by herpes.

    Muscles, teeth, gums, breain etc........( bumps that break the skin on your arms and itch like HELL)

    I have started a daily does of vitamin C, A, lysine, 2 81 milgram aspren, one cafine pill, B complex, B-12. I will also add zinc this week.
  17. darwin

    darwin Newbie

    What about drugs such as Valtrex?
  18. They Help the breakouts

    Valtrex helps with the actual breakout bumps, but does not stop the headaches.

    I expect the headaches every 3 months and they are KILLER I am working with every immune system vitamin known to see if I can extend the period betwen headaches.

    When the first signs come I will go right to the weight room and workout and sometimes it works.

    The majority of the headackes are severe and can be depressing because you cannot function.

    I hope there is a research firm somewhere that is working on the cure, but even though we can create an iPad we cannot cure a virus even as simple as a common cold.

    Keep working on it.
  19. darwin

    darwin Newbie

    I am off work for depression and the headaches have something to do with that. Does anyone feel sweating and heart palpitations? I cant seen to get any work done ever! I get the head aches daily.
  20. I've had the 'H' - as I like to refer to it as - for approximately 27 years. I never had migraines with it until about 20 years ago after a several week long binge of almost nothing but sugar and sweets. I did not know what hit me, but one day, my right eye hurt so bad and felt so swollen that I threw up. I did not know what it was. Years later, after much research and paying attention to my body and my diet, I discovered this migraine ALWAYS happened when I ate or did something that would bring on the 'H'. Only I do not always get the literal outbreak. I'll list some info on my H migraines:

    1. Migraines started after a binge of sugar and chocolate.
    2. I don't always get the outbreak, but can always trace the migraine to things that normally cause outbreaks (diet high in the amino acid 'arginine', too much sun, too many sweets, stress.)
    3. I now have outbreaks in both my nostrils at times.
    4. When my outbreak/migraine comes on, I start to feel tired and feel a tightness in the back side of one side of my neck, then it travels up into my eye. My eye feels very, very painful and is swollen. Definite inflammation. A thermal imaging showed inflammation in the exact spots where I was feeling pain and confirmed this cause of my migaines. H causes inflammation as it travels up the nerves.
    5. I was having migraines and H outbreaks almost constantly for a couple years, then discovered the low 'arginine' diet and Lysine, and natural treatments.
    6. Now I avoid high 'arginine' foods or take large amounts of the amino acid 'Lysine' to offset the arginine. I generally have to take 2 to 4 500 mg Lysine tablets if I eat something high in arginine. Wheat is a big problem because so much of our diet contains it, so even though it is not as high in arginine as nuts or other food items, because it is generally eaten at every meal it adds up. (There were also times that I had to take up to 6 Lysine tablets to get rid of the migraine.
    7. If I take Lysine and/or pain meds IMMEDIATELY upon feeling the tiredness and tightness, I can usually nip the migaine in the bud.
    8. Adding foods high in Lysine to a meal that has a lot of arginine helps as well.
    9. Caffeine and children's Tylenol help tremendously to nip the migraine. The children's Tylenol gets digested and used by the body more quickly than a tablet. I also keep a small bottle of 'Energy Shots' to give a quick boost of B vitamin and caffeine if I feel it coming.
    10. Daily doses of B vitamins, Ester C, Omega 3 fish oil, and exercise are most helpful in keeping my immune system up! The key is to hit it quickly so that it does not get bad. Migraines or headaches are harder to treat once they get beyond a certain point.

    Basically, when I started to watch my 'arginine' intake, became faithful in taking my vitamins and Omega and exercising, I did not have the weekly outbreaks and migraines.

    There is hope!

    Hope this helps someone.

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