Dear all, I had viral meningitis in October 2012 and its nearly 3 years after now! I have chronic migraines from the VM and have had for over 2 years. Off and on. Sometimes more on than off. I am trying botox injections from my neurologist every 3 months as well as daily propranolol and endep. Just wondering if anyone else has any relief from migraines and if so, what are you taking? Im in day 8 now of straight migraines. Had two days off but then it came back. I do take the triptans twice a week for migraines as well but not allowed to have any more than twice a week.
I find that if I didnt have to work and study I can rest and cope with them. But as I am trying to change my life with a new career to make better money, I am busy and its quite hard to cope with the disability. How are the rest of you going with headaches? If you still have them, how long ago was your attack of VM? I keep wondering if this will be forever. That this is it! This is life. I am wondering how people are who are ten years plus after VM. Or even five years plus from VM.
All the VM side effects are gone for me, except the evil and persistant migraines. The gift that just keeps on giving. I still get very fatigued, but thats from studying a masters level degree and working and migraines! Aaarrrgggghhh.
Is this it do you reckon? Doomed to migraine land?
I am having trouble dealing with the reality that I am chronically disabled, and this a reality for me. Maybe if I dont fight it so much it will be easier. Any ideas?
Regards,
Claudefly
Written by
Claudeminh
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I am now 16 months in and have suffered constantly with headaches and severe fatigue, just as we have spoken before. I have posted recently with advice on this site with all the things that have helped. Medication wise I take Amitriptyline 20 or 30 mg at night / early evening so I can get up in the morning and Topiramate 30 mg twice a day. This is the highest dose I can tolerate as they make me very sleepy. I have just had 6 sessions of acupuncture and this seems to have made a huge difference to the headache and the swollen feeling I get in my head.
I have been given some info on a supplement called ARGI + ( L - Arginine) which is produced by a company called Forever. It is supposed to be good for energy and many other health benefits but I haven't tried it yet however I will be doing so.
I take Virgin coconut oil and green smoothies and these help to a degree. I have been told not to take general analgesia as it makes the headaches worse. I also wonder if this is it? I have to go back to a very demanding job in September / October and I don't know how I am going to do it. I too feel very disabled and cannot engage in daily activities and have to spend so much time resting.
I recommend the acupuncture, it seems to be the best of everything that I have tried so far.
Dear Catherine, good to know your acupuncture is helping. I am wondering if you can go back to work part time or are you already doing that? Its hard isnt it to try and fit in as a normal person when you are not. I hope you continue to feel better from the acupuncture and thanks for the reply. Its good to know we are not alone in the journey back.
WIsh I had an answer. I had BM in April 2012 and still have constant headaches that vary in severity from annoying to curl up in a dark corner. I saw a neurologist recently an I was on amitriptyline 25mg each evening but now I have been told to increase slowly to 75mg. I try to only take pain meds when I am struggling to cope. I have been advised to take 900mg asprin but have rizatripran if it is getting very bad and diclofenic (which my gp says I can't take because I shouldn't take anti-inflamitaries.) ]
I know it gets worse the more I do but I am determined to live life post BM. I work 2 days a week and that is my limit at the moment. I also have a few other difficulties from BM such as chronic fatigue and vestibular problems that affects balance and walking and I guess they all feed into each other.
Sorry I don't have a solution for you but I thought it might help to know you are not alone.
Hi Blim, nice to hear from you . Its a hard road isnt it. I am just trying to accept my reduced capacity and find some peace in it as that seems the wisest option. I find endep very useful, I hope it helps you too.I am working 2 days a week also.
Hi, ive just commenced botox injections last week & have had 1 headache since being injected - but its been milder than anything pre-botox. I was on Endep but am weaning off it & are currently at about 20mg a day. Very stoked as the endep is great but the side effects were horrible. Fingers crossed i will be excercise & botox only soon.
I have recently returned to excercising & think this is a massive key to getting better. However, unless you have had vm its very hard to explain the constant tiredness & lethargy that is my excercise motivation blocker!
Hi Nezzaj, wow thats good news. Maybe the botox is going to be a game changer for you? I hope so. I am still on the endep and I find it very useful. I am entering week 3 of botox and its the second injection set. I so hope it works.
If you had a lumbar puncture for diagnostic purposes you are often left with migraines, the numbers are fairly high if you check it out. Have you tried cranio-sacral therapy? It is very gentle and very effective I would certainly persoally recommed it for migraine.
It's awful to about these migraines. I am amazed that you are able to push back to work and study with so much pain. That must take a huge toll both physically and emotionally.
I am 4 weeks post VM (and Mumps). Not able to work yet due to the usual aray of symptoms.
I wantes to ask about others experienced regarding L.P. sites. I find i gets pain if I walk more than 20 mins. My lower back aches and throbs and I feel the headache returning so I then have I lie flat in the dark again .
I'm sure you have an excellent neurologist. Just wanted to tell you that my Dr finally "broke" my migraines be prescribing a medrol pack. I still get them occasionally. But at least in my case they don't have to last so long. And please rest your brain.
Hi, sorry I didn't explain. A medrol pack is low dose prednisone. You start with five tablets on the first day. Then four, on the second and so on until you have finished. Many neurologists use this method in the states. Hope this helps. I wish only the best for you.
My headaches are definitely different than before. I don't get them too often. But when I do, they're bad. My main issue is the dizziness that comes w/ the headaches. I've also noticed my symptoms intensify under stress. Rest & relaxation is what helps me! I pray you get some relief soon!
I was Frist hospitalized in 1994 with VM and over 15 more times with several ICU admissions. 2 weeks ago I spent another 24 hrs in bed with neck ache, headache, and back pain. I doubled my acyclovir and by the next day I was able to eat and by day 3 I was close to normal. This happens every 3 to 4 mo compared to weekly a few years ago.
Dear Sopie, wow thats harsh. Do people grow out of it? As in, does it stop as you age? Thank god the attacks are less than before. Do you have a job and if so how do you tell them when it goes wrong? Sometimes I tell my employers whats going on so they dont just think im lazy taking days off. But I only work 2 days at the moment and I just go in and suffer the consequences.
No I never really tell others what is going on. I fear the resentment, of their attitude, that we cannot afford to have anyone here, that is not at the top of their game. Right now I am not working, I actually was laid off from work, as my job was eliminated due to budget restrictions in healthcare. I am currently looking for employment, and hoping to find something in education or part-time. ---------When I was at work, I would say I have a headache, it is amazing, how migraine headaches are accepted in healthcare, but this condition is not.
I have had vm in May this year. The only way for me to stop my head aches was to learn to stop rest and switch off. I also was studying for my degree as well as run 3 businesses part time. I have really learned to stop. It's very frustrating but it is your body's way of telling you to rest. I have put my studies on hold mine are with the OU they were very understanding and I have 5 years in which to complete what I was studying. I have stopped my most strenuous business of cleaning and someone else is doing the work for me. I run a health and well being home based business with Forever which I'm able to choose when and what time I work and how much I do. This is s god send. I work 2 and a half days in a graphic design studio with a bunch of adults that have learning disabilities. This is enough for me. I go to bed most evenings at 8:30 and meditate for 1/2 hour and wake up around 8 in the morning and do the same thing. I plan my activities around my fatigue. Your body has been through an awful lot and it needs to recover. I my self have found slowing down a real hard one to do and that is frustrating as I said before. I used to cycle, dance, run 5km, study and do 3 part time jobs before the VM. if you spend time on this forum you will see two different types of people. Those who are trying to fight it and those who are truly letting there bodies rest. I have found that the stories differ. The people who are trying to return to there old selves and old routine are complaining of headaches and many symptoms. The ones who are resting have significantly less symptoms but are still suffering the after affects. I have been naturally supplementing my healthy diet. I drink the freedom aloe Vera gel which has a natural anti inflammatory in it called Msm it's has been helping me no end. I also take bee pollen for energy and have lots of healthy smoothies. I feel your pain and frustration but urge you to listen to your body and put a few things on hold at least until the headaches are sorted. Unfortunately there is two choices here your health or your career. I sound harsh I don't mean to it's the reality of this illness.
Dear Toni, thanks for the great reply. We sound like kindred spirits, I have been going 500 miles an hour and always have. But you are so right about the different stories and slowing down. I have been trying so hard to make things happen, and then the migraines prevent me. I am slowly coming to the conclusion that the old me is gone. And that I need to live differently. Im a slow learner I must say. But its good to talk to people who have faced the same challenges and made the changes they had to. Do you still suffer from headaches? I keep hoping I will crack a treatment that will allow me to return to the old me, mostly because I am not sure who the new one is. The only way to find out is to go within and its hard. Im seeing my doctor tomorrow and getting a certificate to take time off while I am studying at uni. I have been doing two jobs and I can only do one. If I get my income insurance I could just study, but its really hard to get them to honour the claim, its a massive fight and not sure it will work out. So maybe the income insurance might not work. Anyway, I am trying to get qualified to do anew higher paying job in occupational safety in Australia. I dont know if it will work but I have to try. It gives me hope that things might change. Thanks a lot for replying, it was great hearing from you.
I must admit my head aches have calmed down. I was prescribed Naproxen which I use very seldom. As soon as I start to feel the symptoms coming on I immediately rest and take it easy. I am not taking any medication now except for this Narproxen the doctor advised me to get rid of all the paracetemol and anotriptoline which I was given. It made me ill in all sorts of ways. I turned to the natural approach and rest. I must admit its so frustrating not being able and at times I want to sit a and cry but I know this will not help my recovery.
One of the places I worked for sent me £100 of vouchers for a beauty salon and I used them weekly to have a neck and shoulder massage and reflexology which has helped me immensely. The muscles in my shoulders are all scrunched up and i can feel it when they massage. I will continue to go until its all supple again. Well worth the money of which I don't have much. they way I see it i have to start to listen for once and slow down. Believe me in a few years time i aim to be my usual fit self. Maybe can go jogging again. My memory is so rubbish now and my clarity is rubbish. I am currently reading about mind chi. Very interesting way to help your self with just 8 minutes away. I sure hope the headaches clear for you soon.
Dear Toni, good news that your headaches have calmed down. Im assuming you have significant fatigue still and hence why resting is so important. I find that resting may not remove the migraine but it makes it easier to bear as I dont have to do anything that makes it worse. I am trying hard to rest now in between university and I must say doing less is wonderful. I have decided to do less but do the things I am doing really well. So that makes me feel good. Oh yes, I wanted to tell you that you are so early in the piece and it takes ages. So considering its only been 9 weeks since May, I think I should reassure you you will get better. I have loads of energy and excellent thinking now, as good as ever. You too will. Its the migraines that are the only source of drama for me, and thats pretty significant. It was 3 months before I felt any better and really improved after a year, so its early early early. Thanks for nice reply and its hard being pretty broke isnt it and needing some therapy of some sort. Keep in touch and lovely to talk to you
Yes it is early in my recovery. I am still suffering with fatigue and body aches which stop me in my tracks. It's so good to know that I will get my energy back a feel better in the future. I have learned that sometimes pain relief can cause headaches and migraines. I feel for you migraines are the worst. I never really understood until this illness. Thank you so much for the reassurance. I feel so pleased to have found this site it's really helped me come to terms with everything.
Dear Toni, I forgot I wanted to tell you that ampitryptiline has stopped all the body pain and neuropathic aching that I had. It works very very well and I take 75mg at night. It makes me hungry so I am bit fat but not obese. The hunger can be managed so its just the discipline. But, if you are aching like a bastard all over, muscles, joints etc ask the drs about it. Its so good for me that I dont want to stop it, its fantastic for central nervous system pain. I have been diagnosed with the classic syndrome of central sensitization. Means after big disease or accident, your central nervous system is jangling and its sending messages to brain. 'Protect protect kill crush destroy!!!' Like a friggen dalek. But actually theres not much there to worry about but now your brain cant stop worrying and the CNS is sending these fake messages and your brain is in the trenches shooting at imaginary martians. Its just wrong. But it causes us pain and drama and the idea is to calm down the CNS, circumvent the messages and the brain slowly forgets about the nightmare and settles down.
I can gaurantee the VM survivors on this site have all got it too. Its common as, and people can get it from car accidents, surgeries etc I met someone who had it from falling down stairs and hitting his back. Two people actually from that. So...the upshot is, if you begin to understand whats happening in there, you worry less about it, and you begin to find the right treatment.
I used to wake up at night, and during the day the aching was so strong I was tested by infectious diseases for dengue type fever. Nothing is wrong. Its just the messages are wrong. So the ampitryptiline helps the messages by stopping them arriving. Hence, no brain reading the pain, the pain that doesnt exist anymore, its like a memory or ghost. Yep, a ghost in the machine. Thats what we are all living with.
So yeah, just lettingyou know that sometimes the drugs can stop that. I found the epileptics were horrendous for side effects but endep was not. It makes me tired but I use it to sleep and I can sleep 12 hours. So dont give up, you might have to try something unorthodox, but it will make a big difference. I have to say I tried to stay on just natural things but the damage was too great and i only improved with the western drugs. And the botox has been fantastic for the migraines. So, yeah if you find you are not coping with the pain and its wiping you out, go back to the dr and try something else till you get it right. I have no side effects from any of the drugs Im on as the improvement outweighed me noticing the side effects. Oh except for the dry mouth from endep if I dont drink 3 liters of water a day. Im very well hydrated these days !! Keeps your skin good.
Hi Rowena and Toni, like you two I was also very active, had a demanding job, very sporty and lived life at 500mph. Now the fatigue is crippling me too. However I have had a breakthrough with the headaches since starting acupuncture. This is also helping to raise my energy levels and help me to generally feel better. Since starting acupuncture, the swollen feeling has reduced in my head relieving the pain and the pain and stiffness in my neck. I actually cannot believe the difference it has made. So far I have had 8 sessions. My energy levels can be measured by a computer program and registered in a graph which I can show to my doctor and neurologist giving back up to what I am telling them. I was advised to have acupuncture by my neurologist and by the doctor I saw at pain clinic. I would definitely say it is worth a try if you find a good therapist.
Dear Catherine, wow good news for you with acupuncture. Thank god something is working hey. I left you a message on your other post about the botox so I wont repeat it. Just glad to hear you are feeling some relief!! Its like just when you think its beyond all help, something shifts, maybe just in time to save our sanity hey.
Have u tried cranial osteopathy really helped my head.... Also I'm on topiramate.... I'm ok 100 mg twice a day now and it has got rid of my migraine and cloudy / heavy head. But I had to push through the sticky kidney pain weeks.... I say 3 weeks of that till I worked up my dose.... But it was best thing I did now sickness and kidney pain gone and so headaches.... Still get the odd one but not a daily thing.
Hello, im Amy and im 13. I know exactly what it feels like. I had meningitis when i was four and again at 10 since then i have jad really bad headaches and lost sight in one eye x it does get better you will have good days and bad days xx
Hi Amy, wow thats a lot to go through for a young person isnt it. Did you have viral or bacterial meningitis and did they tell you why it happened twice? The good thing about being young though is that your ability to heal is much better cause all your cells are still growing. So if you think of it that way, youve got above average chances of healing completely. That might not help much when you are feeling poorly though. I just want to give you some hope that it will be Ok. Even i have improved hugely and I am 46! So thats good. Anyway, keep in touch if you need to talk every one here has gone through some version of the same meningitis crap! All the best to you,
You sound so much like me. I completed the Masters degree in Public Health. Perhaps when you are able we should a study or literature analysis of VM, and try to help others understand so more research can be directed toward this dx.
Dear Sopie, sorry such late reply, I could not get back into the posts for ages. Yes I am doing my masters of OHS next year in the hope of getting a better paying job, paying off my house and then only working part time for the rest of my LIFE. Sigh....its been a bloody mission and If I wasnt so determined I would have given up years ago.I still might have to give up depending on how treatment goes, but at the moment I have my first badly paid OHS job that is the start of something, as long as I dont die of migraine pain.
What are you doing now and hows it going? It would be nice to have a conversation with you if you get this message.
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