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Tonya, Finally William had his neuro appt. I'm not sure I'm very happy with the outcome. He was "diagnosed" with...dun dun dun....migraines! Well, duh! Like I needed a specialist to figure that one out! He didn't send him for any more tests which is just fine by me because they would cost me. His CT scan went directly to deductable. He did put him on the lowest dose of amitryptaline. It is supposed to help him with sleep, but it hasn't helped that yet. He has been on it for 5 days. It's supposed to take 2 weeks to work up to the full effect. I suggested the calcium channel blockers, but he didn't think that would work. He also suggested William see a psychologist for some of his other problems, although it is possible most of those problems would disappear with the right medical treatment. He hasn't had any more major episodes, but they are still daily. We'll see.
I'm shocked that the neuro didn't think a calcium channel blocker would "help" with HM. I am in no way a doctor, nor am I giving you medical advice; however, all of the HMers I know, with a few rare exceptions, take at least a calcium channel blocker as well as other migraine medicine(s).
It might not hurt to get another opinion. Many of us have gone through several neuros until we found one that could work with us and provide care that we were confident in.
Hugs to you and William.
User name: Agent Dollie
Geographical area: Pittsburgh, PA
Age and date of onset: 23 years old; March 2012
Current treatment: Daily- Amitriptyline, As Needed- Imitrex (neither work anymore); I am identifying my triggers and avoiding them (dyes, nitrates, preservatives, foods)
Mini-bio and introduction to let us know your story: I am a beautician who has been working from home for the past several months. I, as many of you, am mostly stuck at home due to the severity and frequency of my HM. I believe I had been having them on rare occasions for years, but since they were so few and far between, there was no link.
Last year I was at my old job sitting at the reception desk and suddenly I felt like my head was going to explode. I actually thought I was going to die. So I was officially got DX with migraines and hypothyroidism. Skip ahead a few months, I have my first HM episode in July. I went to the ER twice in one week (woke up with SEVERE chest pain, weakness in left arm, unable to breathe well, confusion. Got worse over a few days and was sent to ER with possibility of stroke and or collapsed lung) and all I was told was that I pulled a muscle and to go home with a referral to a neuro. Skip ahead again a few months later and I finally get DX with HM. This is on top of the severe SI joint pain, gait issues and spine stiffness I had been having for months.
I'm now at the point where I'm frustrated because the meds I'm taking no longer work. My symptoms now are out of control. I can't even go to the store or enjoy time with family because I'm worn out within an hour. I feel like some of my doctors think I'm crazy. I know the ER ones did. I was told to reduce my stress and be active. I reduced my stress (quit the salon job I had--- thank the Fonz i did that), but at this point I'm unable to stand/ walk longer than about 15 minutes and I cannot really drive so trying to stay active is difficult.
I'm now 25 and it's hard for me to have this happen. I'm quite lonely. I spend a lot of time on the computer to talk to people. My life has changed. I try to to feel depressed about it, but it's hard when you see your friends on Facebook talk about going on vacation and having fun. All I have is sitting at home or maybe occasionally going out for an hour or so. I'm hoping that I can get things managed to where I can once again have fun.
Location: Surrey, England
Onset: Not sure, possible started 6 or 7 years ago in a milder form, then sudden collapse and intense symptoms started 16 May 2013 and symptoms still going strong.
date of Diagnosis: 8th July 2013
Medication: started on low dose o,5mg of Pizotifen for 21 days, then increasing to 1mg after that, to be reviewed in 3 months.
I;m new to this having just been diagnosed with apparently a rare form of Migraine Auras, dysphasic aura and hemiplegic migraine. Have never had a migraine before in my life as far as I know I was surprised to learn of this diagnosis. Like many, I assumed Migraine to be a very severe headache, nausea, light sensitivity, I had no idea it could manifest itself in different ways so this all very new for me.
have been going through various tests for MS, Fibromyalgia, Lupus, vitamin deficiency and other things to establish what is causing my neurological disturbances and was diagnosed with this on Monday having seen a very good and very experienced neurologist for s 2nd opinion having already seen one neurologist who said it was just depression.
I am 49,female, 2 grown up kids and 1 grand daughter , have a career in Pensions and used to be a very energetic and bubbly person. This condition has completely floored me and currently I can't function in the way I used to.
My symptoms are:
Extreme dizziness (constant)
Visual disturbances, blurred or wavy vision.
Loss of balance
Pins and needles all over but mostly face/eye lids/ ears/scalp.
Paresthesia (left leg and foot)
Pain (moderate) in left eye (sometimes both)
Extreme confusion (brain fog)and memory problems.
Occasional speech difficulties
Occassional swallowing difficulties
Constipation some days, others diahorrea
general weakness, mostly left hand side
I would love to hear of other peoples experiences, how to cope and types of medication etc.
Thanks for your time :-)
Hi fellow UK person!
I'm sorry to hear you've had to join this forum, but it's great that you did as there is a lot of good information, and usually someone to ask questions of.
I'm mid attack atm, so please excuse the wonky reply. I'll reply more when I'm out the other side of brain fog and vertigo. Blessed thing.
I'd love to know who you saw for your dx. I have a general neuro to whom I was transferred after being dx by one of the consultants at the local stroke unit. I didn't have to hang around long to get my dx - two weeks after the attack that took me into A&E. I'm one of the lucky ones there.
I'm now taking a cocktail of Amitriptyline, Pizotifen, Maxalt (There's an argument that we shouldn't be taking abortives of this nature), and ibuprofen and paracetamol for the headache. I was under a huge amount of stress when mine struck, but I've been a regular migraineur since early teens. It's under control as far as it goes, but I get the odd biggies alongside 'normal' migraines about once a month-6 weeks. I have other chronic conditions including hypothyroidism, and have to take hormone meds for gynae issues, though it's a bit hit and miss as to what won't trigger an attack.
My symptoms are very much like yours, and I'm about the same age. I can't isolate triggers; extreme stress is the worst.
It sounds as if you have a good consultant, but if you are having problems, there's a list of UK doctors on the site. Teri can signpost you to some as well. As you're nearer London, there's a walk-in clinic, I believe that you can access. Details should be on the site. It might be worth posting on the general thread as this part of the board goes quiet, as you've probably realised.
Anyway, sorry this is so short. I'll come back asap when the desk isn't moving!
Look after yourself, and please ask Teri and the others if you have any questions. I have to say, Teri's been a great help!
'Speak' soon, I hope!
* user name - CultureBeatFan
* geographical area - Illinois, USA
* age and date of onset - hemiplegic migraine diagnosed 19 Sep 13 in ER at age 36; initial migraine diagnosis 1 Jan 13 at age 35
* current treatment - depakote 500 mg nightly, topamax 100 x 2 daily, plus 25 mg in am; fioricet as needed for rescue
* mini-bio and introduction to let us know your story
Hi. I posted my intro in the intro forum and I figured I would post here too. I signed up in this forum to gain knowledge and to get/share support for these dreaded migraines. Right now, my brain is mush because I have trouble focusing and putting words together through this attack, which started a week ago. I have missed a week of work because my symptoms have rendered me bedridden. The trouble with word finding and concentration makes for poor grammar, which is not the norm for me.
* any other information you'd like to share
I usually post from a tablet because the light from my computer is too much for my eyes. My hand-eye coordination is challenged even more with the migraine attack and the autocorrect messes words up which I do my best to catch. However if my posts sound weird, it is likely due to my lack of comprehension mixed with the autocorrect gone awry.
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