Please help me- constant migraine for 2 months- suicidal.

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Hello. Just writing this is making me feel extrememly ill to look at the screen and type.

i am. 36. a nurse. happily married with a 5 and 2 year old girls. fab life. Boxing day started to feel shakey and ill. I had stopped taking my contaceptive pill early december as we awere going to try for another baby. felt headachey and unwell all december. thought i had a virus. "7th December woke up and was bumb dowb right side. Went to hospital. Had MRi. No stroke. Pineal cyst. All OK. No pain. ? migriane aura . Told to take aspriin and go home. Basically my symptoms have got worse and worse.

I feel extremely unwell all the time.

Pins and needles coming and going both sides

Dizzyness, Nausea,Some visual disturbance but not much, swallowing feels wierd and keep doing involuntary swallows when trying to sleep, legs really achey, cant read or watch TV or look at screens.

I am in bed nearly all the time.

It feels like my brain is shaking and I keep having hypo like feelings as though I am going to collapse.

Tingling over my face,

Feelings of pressure in my right eye, both ears abd both sides of head and back of head,

aching in temples and jaw.

sleeping pattern has gone out of the window and I keep having these electic shock type feelings in my chest which jolt me awake each time i try and fall asleep which is like torture.

I cannot look after my children. My mum has moved im with us. I can barely look after myself.

I am at my wits end. If I lived in  a high rise I would throw myself out to make it stop but unfortunately dont.

I saw a neurologist Dr Davies in Stoke in January who started me on topiramate 50 mgs twice a day. This has not helped so far. In fact I think it might have increased my symptoms.

Please help anyone. Or a lift to Beechy head?!!!

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13 Replies

  • Posted

    Hi,

    Well for a start the topiramate is renowned for making you feel worse and suicidal, it did me!

    You have so many symptoms, and feeling so unwell you have to nag drs into helping you sometimes.

    See your GP tell him and I mean tell him, you will not take this drug anymore, this is what I had to do.  You need another urgent referal to the neurologist and certainly an MRI scan too.

    Please try to hang in there, trust me I have been in your position  and I know its really tough!

    I cannot advise you anymore than to keep nagging the Drs, thats what they are paid for to make you better.

    I know it doenst help much, but I can sympathise with you entirely.

    Do take care and I hope you are feeling better again soon.

    Keep us up to date with your progress please and remember you are not alone, just keep telling us exactly how you feel.

     

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  • Posted

    Bear11:

    topomax didn't work for me either, some people find it to be a miracle drug. I told my family that I would put an end to all this suffering if I couldn't figure it out and get relief in 6 months. I now know I could never hurt my family in that way. I'm instead re-committed to finding a solution to the pain. There is help out there but unfortunately it's mostly trial/error and I'm sure you feel very alone. I've had my chronic migraines for 35+ years (daily for the last 3 or so) and I'm just finding out that I have TMJ, a slipped disk in my cervical spine, and a pinched nerve. None of which are great diagnosis but you need to be your own advocate and push the dr's to help you or find new ones. Try to be patient, suicide is not the answer. Get angry and tough on your pain. I will send my prayers your way. 

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  • Posted

    I had this.. six years of it... I take the right vitamins, now... seriously.. vitamins. they are in fruits and vegatables for a reason! I take: ferrous gluconate (form of iron that won't clog you up,) methylated folate (never folic acid!) methylated b6 (called p-5p,) liquid b12 (methylcobalamin ONLY!) (never cobalamin!) and ALL the fat soluable vitamins: A, D, E, and K in the form of a probiotic. If you take these, all of these, ESPECIALLY THE B12, IRON, FOLATE AND VITAMIN A... you will get better in a few months. Be consistant. Get the vitamins from a Vitamin Shop. Don't substitute forms. Don't let them sell you folic acid instead of folate, for example. Zinc may be a good idea, too. All of these vitamins are inexplensive. I take Maxalt for "break through headaches," which are the one or two headaces I still get because I get lazy about the vitamins when I start to feel better. NOTE: a person can overdose, so be careful on your intake. NO doctor will tell you to take vitamins, they can't because vitamins are not prescriptions (yet.) I'm 40 and I work in healthcare, too. Take the list to the vitamin shop. The computer screen is zapping your vitamin A. For real. 
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    • Posted

      This is a very good reminder. Thank-you. I use magnesium L-threonate, folic acid in methyl folate formulation, Feverfew, Butterbur, etc. They really do help the constant daily headaches. I just had a b-day, and my migraines have hung around for 38+ years. Susan, I will try the others you've listed, and for some of you that don't understand why - many people do not absorb the vitamins listed above properly. I really believe the different formulations work very well and can be added to most regimens. It's always best to check in with your dr 1st. 
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  • Posted

    Hello, I have had similiar symptoms so I can relate to your pain and it is terrible. I had migraines 24/7 for 12 weeks last year. Since you mentioned you are suicidal, I would get immediate psychiatric help. Do not play around with these kinds of thoughts. You have two children that need you. You will get thru this. Secondly, low magnesium is often a cause of migraine. Take 400 mg of magnesium glycinate (the most absorbable form) and see if it helps. Here is a link about pineal cysts. http://migraine.com/topic/pineal-cyst/ ; It says they do not usually cause migraine but you never know. Migraines take a while to figure out sometimes as there are so many triggers: stress, diet, hormones, etc. You also mentioned you got off birth control pills. Perhaps your hormones are out of whack which also brings on migraines. Talk to your gynecologist about this. It may be the root of the problem. Once your hormones are balanced, the migraines should settle down. Hang in there. You are not alone. You will get thru this! Keep in touch.
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    • Posted

      Patricia and Susan: a good Internist should be able to order a CBC and include the levels of those vitamins in your blood which will help him/her to know if you need the supplements due to poor diet, or poor absorption. 
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    • Posted

      I am not a doctor, but I am a human who cured my headaches with vitamins. Bloodwork can run into the thousands. The "normal level" for one person may not be the "normal level for another person I think.. as a non doctor mind you. It is my belief that one should get vitamin levels checked to be sure one is not overdosing, but to get started.. just take the damn things! Vitamins are cheap.. what is everyone waiting for?? I don't sell vitamins, I look for no profit here at all.. I'm just reporting what worked for me. I'm normal, I am 40, I had "atypical cluster-like migrane headaches daily for six years.. you decide. I get one or two a month now. If that. A vitamin D test is anywhere from 500 to 250 bucks... just take it.. vitamin A can be even more expensive to test for and I work at a lab, I know how those types of test need to be drawn in a light protected tube, spun down and the plasma sepparated and frozen immediately.. which never gets done properly, not to mention the shipping temperature isn't consistant. The results aren't always as acurate as we think they are. Just don't overdose is all. Keep vitamins in moderatio and let your doc know you're taking them.
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  • Posted

    You need to see a different more sympathetic GP who will go through all your symptoms and try to find the cause.  I have read so much and am on and off convinced that i have an acoustic neuroma but need an mri. 
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  • Posted

    I've had migraines for 40 years. The last 2 worsened and daily clusters 4 months straight last year. I can truly relate to where you are. As others have said, you are NOT alone.

    Since there are already some good replies here that fit my experience, I won't restate.

    Topomax is a tough one to tolerate for many and can get scary, especially early on when adjustiing. That said, it worked wonders for me, but not at 50 dose but 75. Though the high price in side effects like emotional, GI pain, kidney, high creatinine, visual, anxiety.and others.....ultimately made me get off it. Triokendi is an extended release form my neuro recommended. That might be worth a try and seems to limit side effects substantially. MUCH less emotional, cognitive, etc....

    Try Imitrex injectable first! Maxalt ODT (faster acting melts in mouth), or Zomig nasal spray, Butterbur, magnesium, melatonin, vitamins, and especially mild but consistent exercise-even short walks if you can-is CRITICAL (easy to say, I know, but when I was at the level of suffering you describe, it felt impossible to do....).

    I avoid screens, avoid flickering lights (headlights in night traffic for instance), and loud sounds (for me), print out whenever you can if you must be on computer for any length of time (sorry, Mother Earth, but this is serious pain!). You might try oxygen as some serious sufferers swear by it, and Botox has helped many.

    That's it for now as my head is worsening from typing and looking at this screen-just like YOU posted. Do not give in or up. It WILL improve.

    Hopeful for you!

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  • Posted

    Bear,

    Not sure this is the same problem as you but I'm sure you will try just about anything!

    I started having migraines at 13 and also suffered anxiety and I have only now 30 years later linked the two. I believe people who suffer anxiety with no psychological explanation either produce excess adrenaline or can't break it down. My triggers are exercise (but not every time) and eating oranges which made my tongue swell. Both these involve the release of adrenaline. I see a migraine as a symptom of anxiety. Control the adrenaline with medication and say goodbye to anxiety and migraines.

    Won't be the case for everyone but worth trying. I am on Propranolol which is for anxiety and also prescribed to prevent migraine. People who get migraine are 3 x more likely to get anxiety.

    Hope this solves it for you!

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  • Posted

    My advice get off Topiramate as fast as they allow - I only could tolerate 2 tablets and even then - hand tingling, low mood, word loss, memory loss, huge hair loss, poor skin, more headaches and for the first time depression, anxiety and panic attacks.  So much better now I'm off them.  Sadly I am still looking for that ultimate cure and am suffering with 10-15 a month even though I can only work 3 days instead of full week.  I am looking at Botox although reluctantly.
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  • Posted

    Sorry I meant to say - I told the GP that I was coming off them whether they liked it or not and they advised how many to take to wean myself off.

    I learnt the hard way when I abruptly came of Amytriptiline a couple of years previously.  But it is your body, brain and life - you decide.

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