Migraines everyday, all day, for 9 months. Help!!
Posted , 296 users are following.
Remember your worst migraine. How much pain you were in and how you just couldn't do anything. That's how I am everyday.
Right so I'm a 20 year old female, I'm and student and work as a waitress part time.
So, I started with a headache on the 18th January this year, pain killers didn't touch it. Woke up the next day and still had a terrible headache.
I have a terrible headache all day, everyday, without fail. It's got to the point now that I'm stressed; fed up, hardly sleeping, can't concentrate at uni or any time really.
Please understand that the pain never goes, the headache never ends. I have literally had a migraine 24/7 for 9 months now.
I wear glasses (short sighted) but I know it's not my eyes causing the migraines.
I've cut out everything that's apparently supposed to aggravate headaches. Stop drinking caffeine, stop eating chocolate and cheese. No change in the headaches.
This continued for a week or two before I went to see my GP who referred me to a neurologist.
The first neurologist thought I had tension headaches caused by stress.
At this point, I wasn't stressed at all, not with uni or work, nothing. So I didn't quite understand this diagnosis.
Anyway he put me onto tablets called amitriptyline, which is an antidepressant, and told me to gradually increase my dosage up to 50mg a day. This didn't help at all, had horrible side affects.
I then saw another neurologist who diagnosed me with migraines, put me into Topamax, which are an anti epileptic drug meant to also treat migraines. I got my dose up to 100mg within 3 months and the side affects were horrible and didn't help at all.
I've had a CT scan, which was normal. Had an MRI scan, which was normal. I've also tried Imigran and some migraine medication that melts into your tongue, with no affect what so ever.
After trying all this, an idea was put forward that I could have raised intracranial hypertension, so yesterday I had a Lumbar Puncture. The pressure was at 19 and a half (apparently if its over 20 it's high), so it's not thought its that. The migraines were worse for a week after the lumbar puncture, I couldn't even sit up without being in agony and being sick. Spent a week in bed unable to move.
I've got another type of MRI scan booked for the end of this month that's apparently going to look at the veins/blood vessels in my head to see if there is a problem there.
I feel like I'm not being taken seriously now by doctors, because "there isn't anything to be worried about, like a tumour" as I'm always told! As much as I'm so very glad I don't have anything serious to be worried about, I hate spending everyday in so much pain that I can't function.
Please don't think I'm over reacting/attention seeking/whatever, but I am literally fed up and can't cope. I can't get a minute of relief, I'm constantly in pain (different variations of pain, but pain all the same). As I'm writing this I'm crying my eyes out because I haven't managed to sleep more than 3 hours a night in that past 4 days. I'm exhausted and depressed now. I've even told my GP that I am so depressed now, I have thought on more than one occasion of overdosing just to end this pain. And he literally turned me away saying he couldn't do anything. I feel so defeated.
If anyone has had this type of problem before or knows someone that has, please let me know.
24 likes, 741 replies
jim03290 Becky-Louise
Posted
It is incredible how few people have found relief for long term chronic headaches. I hope someone will post a cure soon- I'm now 9 months, no break in headaches. I, too, have had all the tests, tried many medications , and I'm scheduled to see a neurologist. In the meantime, 0.5mg of Cesamet ( synthetic cannabis derivative ) twice a day has allowed the home remedy stuff to work better- things like neck traction , massage,
heat and warm showers.
Somebody please post a success story !!!!!.......jim03290
helen65899 Becky-Louise
Posted
Hi Becky-Louise,
I'm so sorry to hear of your pain. I have bad migraine, but it comes and goes. It sounds as if you have Perpetual Headache syndrome. I heard of it via the Migraine Action Association (which I recommend.) They research new cures, hold day conferences, produce a magazine, and have a helpline with a migraine nurse. I think they would advise you to ask to be referred to a specialist migraine clinic. There are clinics in most U.K cities - London, Oxford etc. Migraine is a complex neurological condition, and there are lots of treatments, but "no one size fits all". Botox, and even strange ear piercing can help. I'm on propranolol, which is a migraine preventative. The association is always up to date with the latest research and cures. Worth a try... Good luck, and may you be out of pain very soon. Helen
nicola67221 Becky-Louise
Posted
Dear Becky-Louise, I had a similar experience a few years ago with a never ending migraine that lasted for 3 weeks. I have had migraines all my life and I don't get auras beforehand. My GP was sympathetic but couldn't solve it. Eventually I saw via the NHS a psychiatrist who could prescribe drugs - he put me on Mirtazipine an anti depressant and zopiclone a sleeping tablet. I also had temazepam for the first few days. I hadn't slept for 3 weeks. I didn't believe it would work but it did. After a while I was then able to move on to less strong medication. i really hope we can support you, as I too was totally desperate at the time.
cassandra15502 Becky-Louise
Posted
Have you figured anything out yet? My daughter who is 14 has a daily headache for 9 months so far her migraine are getting more frequently and more severe. No mri or CT scans yet . It's not hormonal based not weather based. We are both at wits end. She is seeing a neurologist at children's hospital it's not her eyes. I just don't know what to do.
franca_1712 cassandra15502
Posted
Hi cassandra
My daughter is now 13 and has been suffering every day since june with extremely painful right side migraines which, since since November, have been left side temple/eyeball cluster headaches. She used to have at least 6 attacks a day, lasting anywhere between 3 and 25 mins long. Up until 3 days ago, she hadn't had an attack. Last night's one lasted 12mins and she said it was the worse pain yet. After seeing a naturopath, who gave my daughter a product called r16 which is specifically for migraines, the attacks calmed. I'm thinking that attacks are starting again as school goes back this monday and she hasn't been since august.
We've been to 3 different paediatricians, countless medications, physiotherapy, headache clinic, optometrist, blood tests, iron infusion. Only our gp and headache clinic believed us about the everyday pain. Mri scans were clear, cat scan too invasive due to unnecessary radiation. And we're on a waiting list for neurologist.
I'm understanding what you're going through. My daughter is now seeing a specialised trauma psychologist as her migraines stem from stress/anxiety/mental trauma.
I hope I've been able to give you other areas you can look into.
My thoughts are with you x
yvonne14949 Becky-Louise
Posted
becks123 yvonne14949
Posted
Yvonne,
I don't believe the menopause thing as my husband is having this issue! He can't do anything either. Do you get dizziness as well?
becks123 Becky-Louise
Posted
Your story sounds EXACTLY like my husband. His has been for 13 months now with no relief. All tests come back "negative". The only positive tests were the loss of his peripheral vision.
Have you found any relief or answers?
Mymia Becky-Louise
Posted
Hi, I have similar problems. I have had constant headaches for 9 months now, and have taken anti-inflammatorys, muscle relaxers, and sinus medication. I saw a neurologist a few weeks ago and he prescribed topirimate, which only made me more sick, and since then I have been in the hospital and throwing up daily. My family doctor doesn't know what to do and think they are just cluster headaches. He turned me down when I asked about a CT or a CTA, he also didn't mention if my muscle weakness could be caused buy this. What helped you?
Caui Becky-Louise
Posted
Hello !!! I am in the exactttttt same boat as you. I was first diagnosed with intracranial hypertension and I have severe head pain every single day and it never stops. If never stops. I have lost a job, school and an ex because of all of this. I have taken meds like Diamox, topiramate, raglan, verapamil, gabapentin, ssumatriptan, rizatriptan, ZOMIG, cambia, amitryptilne, depakotr and no surprise did this ever help. I'm going on month 9 of chronic head pain. I'm laying down now from an Lumbar puncture and I'm reallg at a loss. My doctor really encourages I try more meds because she says there's many meds that I haven't tried yet.... I'm praying that there's one out there that can just help!!!!!!!!!! :'(( I'm at my wits and and I'm considering suicide... I'm really only living for my family friends and pets. I really hope you reply sometime because I'd like to talk to someone about this. Thank you for taking time to read this <3
becks123 Becky-Louise
Posted
I feel for all of you. My husband is feeling at his wits end as well as myself! Doctors just keep throwing medication his way and NOTHING works. I wish they would look at the "root" cause but there doesn't seem to be anything. My husband quite drinking over a year ago and we are thinking maybe related to that? Has anyone else encountered a relation to this? He was also on Klonopin for 18 years and gave that up. We are thinking maybe his brain does not know how to function anymore. Only thing is, this all started before he quit everything. He also vapes. Anyone else do this? Maybe related? We are seeing a neuromuscular therpist next and beginning to explore alternative medicine. He has done all the drugs as well as physical therapy, shots, lumbar punctures, CT scans, MRI's every other test known. Has anyone else experienced loss of peripheral vision with this?
jim03290 becks123
Posted
I've had CT scans, one with radioactive dye injected into a vein, MRI, X-rays, accupuncture and cortizone injections. None of these procedures produced loss of peripheral vision. If your husband vapes, get him to STOP !!! You can find a number of medical reports that show vaping can cause seizures.
becks123 jim03290
Posted
Jim, the peripheral vision loss is related to the headaches/pressure, not any of the procedures. Just wondering if anyones has this problem? As for the vaping, he is working on cutting down. Also switched to VG vapor but no difference. Trying an "all natural" one as well. We'll see on that. Would be great if that were the answer. All symptoms point to migraine, but shouldn't be lasting for months at a time!
lauren40311 Becky-Louise
Posted
Hey Becky I was wondering if anything has helped? I am 17 and I have had the same headache for 11 months now as far as I know all my scans are normal I have been on most of the same medications and I am just tired of being in pain. There are no triggers, not noise, light , anything. I wear glasses and I went and got a new prescription when this started and it didn't work. It is a 4 on a good day at but if it gets bad I can't even move. I am a senior in high school and I can't focus in class because my head hurts. I didn't hit my head at all i have changed my diet and my stress level but it never goes away. It is there when I wake up and when I got to sleep. I don't sleep well because of my head and I don't know what to do anymore.
Please help.
franca_1712 lauren40311
Posted
My 13yr old daughter is in the same boat as you but no meds work. Paediatric neurologist in a couple of weeks. Hoping to get answers this time as we haven't had much luck since august. Her migraines have shifted to cluster headaches in the last 3months, however my daughter still manages to sleep.
Wishing you all the very best
pj523 franca_1712
Posted
I also started getting migraines when I was your daughter's age. I had what is called a "baseline headache" everyday with severe headaches a couple times a month. I also struggled with stomach problems, too. I was a perfectionist and overachiever, and I think a lot of doctors thought my symptoms were by-products of that mentality. I'm 26 now, and I still deal with headaches and stomach pains, but for a long time I felt like we were just shooting in the dark to find out what was wrong. We visited doctors all over the United States. I even went to the Mayo Clinic for a week. I know my mom was my tireless champion to find a cure for me. (:
Right now, I get Botox injections from my neurologist, take topiramate to keep the headaches at bay and, although I have a RX for Relpax to take when I feel a migraine coming on, it's really expensive. Lately I've found that drinking dark or tart cherry juice morning, afternoon, and night has made a huge difference! Like the difference between getting a headache and not. It has also helped my muscles and stomach.
The most helpful things I have found doctor-wise (and they may not be the same for your daughter) were to get a blood glucose test done to check for reactive hypoglycemia, which is NOT the same test for diabetes. I didn't know it, but my blood sugar levels were dropping to the low 40s, giving me terrible irritability, making it hard to think, and causing awful headaches. My doctor put me on Metformin to regulate my blood sugar and suggested a low carb diet where I eat every 2 hours. By the way, reactive hypoglycemia is different than regular hypoglycemia, so if you research it, make sure you're looking at "reactive" or "idiopathic".
Next, I had tried topiramate a few times with no real luck, but when I was put on spironolactone and tried topiramate again, for some reason, it clicked. I know sometimes hormones can have a play in headaches, so maybe seeing a hormone specialist would be helpful. (I recommend coupling spironolactone with a birth control for the sake of a regular cycle. However, TOPIRAMATE WILL MAKE BIRTH CONTROL LESS EFFECTIVE. Where your daughter is young, that's not an issue, but I'm putting it in bold for anyone else reading this.)
Also, I think a lot of people overlook the impact posture has on headaches. I can tell when I've spent to much time hunched over my phone or a book, or even sitting with my legs crossed because it pulls on the muscles at the base of my skull and can set off a headache. Finding a chiropractor, physical therapist, or massage therapist who knows how to a) relieve soreness and b) can instruct you and your daughter on ways to relieve pain when she needs it would be a valuable asset.
I hope any portion of this is helpful. I had so many years of struggling through pain. It's still a struggle, but I really think it has made me a better person. Hopefully your daughter finds some relief soon. (: