I have migraines and weakness but no confirmed diagnosis.

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Since November 2013 I have been having horible headaches and sharp stabbing head pains and periods of left sided weakness/stiffness. At first this was diagnosised as possible shingles with Bells Palsy and then Neuralgia. The left sided weakness was put down to anxiousness  by a doctor who was more intested in going home on a Friday night then treating his patient. I was put on Tramodol. Then Amitriptlylne.I was diagnosised with migraines after a stay on a stroke ward with another bad attack of the left sided weakness/stiffness. I have since been seeing a really suppportive neurologist who has been trying me on differnt meds to find one that helps. unfortuanlty he is unsure what type of migraine i'm suffering so has referred me to Professor Peter Goadsby at Kings College Hospital. This uncertainy has left me feeling frustrated and fed up. I don't no anyone else who suffers anything similiar. This past week has been really bad as I have come of Propanolol and started on Topiramate. I have had a bad attack of weaknes/stiffness, head pains, migraines. I normally work but we have been shut luckily for the last few weeks. This has effected my life to such a degree. I find myself pretending to people I'm ok when some days I'm not, all i want to do is sleep. Can anyone else relate to that.

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  • Posted

    Hi, I suffer with a right side headache and a numb sensation from my face down to my foot. I don't have a weakness as such, I'm on propranolol which doesn't seem to help, but I've only been back on it for 3 weeks. I hated amitriptyline. I also suffer from anxiety and take citalopram. I've started having tinnitus and fluttering in my right ear. I'm waiting for an MRI scan, have you had one? Migraines seem to be really complicated. I've started having muscle twitching too and a lot of neck pain I always worry it's more serious than just migraine as you say they can't really diagnose it they just go on the symptoms.
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    • Posted

      Hi I was put on Amitripleyne for the Neuralgia it helped that but combined with Tramadol seemed to mask the Migraines. My Neurologist doesn't think I had shingles and neither does my GP as I had no rash just head pain. The left sided weakness hit 2 weeks after after the initial head pain. It just came over me at work. I had a MRI last April but they saw nothing on it. I have had a lot of earache this week but my ears have been checked are fine. I lose some sensation on my left side during a bad attack. At the moment the left side of head is very sensitive to touch also. How long have you suffered?
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    • Posted

      HI. You say you hated amitriptyline. Do you mind if I ask why ?

      My specialist has asked me if I want to try amitriptyline for my vertigo and migraines and I said I will have a thik about it and decide before I see him next.

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  • Posted

    hi,

    The condition is called Hemaplegic Migraine as I suffer from the same thing and like you have been hospitalised several times because of it.

    Topirimate made me suicidal.  I am currently taking Flunaizine, but the best thing for me so far has been Botox injections.

    Good luck with the Neurologist

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    • Posted

      My Neurologist has asked Professor Goadsby to look at possible Hemiplegic migraine, but also something called MUMS and migraine with associated weakness. I am only on a low dose of Topiramate at the moment so side effects are very minimal. I was on propranolol. That helped with the Migraines I was getting one a month but was still having left sided weakness about every 2 weeks. This last attack has lasted 2 weeks with 3 migraine headaches.
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  • Posted

    Unfortunately for me, there isn’t much I can do because they are so rare and on the extreme side of the worst case scenario. I have tried everything including working out and yoga. I have changed my diet due to having to have gastric bypass. Because of the all the meds including the beta and calcium channel blockers, I was 150 lbs. but I gained over 200. I am now down to 125 but I needed to get the weight off for the migraines so that was the best option. I basically shot myself in the foot because I can no longer take any NSAIDS including Advil, Naperson, or aspirin or steroids which is one thing that use to help me. Between that and my allergies, I can’t get the “migraine cocktail” that includes Compazine (allergy), Toradol (NSAID), and Magnesium. So now I am faced to go through life like this.You said they thought you had a TIA, I have had serval. I actually have had 7 strokes. I am 37 yrs. old and had my first stroke on my 2nd wedding anniversary, January 9, 2001. It has been 14 ½ yrs. and its only getting worse. I was in the hospital for 7 months because after the stroke I started having the migraines but they didn’t know what it was then that was causing so much pain. I have had numerous CT, PET, and MRI scans. I’ve had over 20 spinal taps and the trials I’ve been in, each lasting a week, were so trying. I would go down to post op/pre op where I received Lidocaine, then 60 Ketamine, then 120 Propofol and 60 Ketamine. Every day, each lasting a week, I was in the hospital for over 3 weeks with these studies. Botox didn’t work and no med combination helped me.
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    • Posted

      Rodsan, I don't no how to reply to you. I no I don't suffer anywhere as much as a lot of people. I have reached out to find people with similar types of migrane. You have been through and are Still going through a lot. My GP isn't very supportive, he will no longer write me a sick note even though he has examined during attacks. I have only had my attacks for 21 months, they just started likes this suddenly. Do you have any support from family or friends?
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