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Old 01-01-2008, 09:06 PM #1
boukness boukness is offline
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Default Bam Migraines Any Help Please ????

I have had four attacks this past year that have left me paralized on one side for more than 45 days at a time. This condition is horrible. I sometimes can't get out of bed. The light and noise hurts my head. I can't concentrate or think straight. I don't know much about this and my family thinks I am crazy. I know i'm not crazy i just need help. I go to sleep and pray that I will never wake up because it is so bad. I also have fibro and obstructive sleep apnea and do not know if they are related in any way to the BAM migraines. My Neurologist said I need to be stress free or I am a ticking time bomb. What does that mean? Will I die? I don't know what to do anymore. Can anyone help me to understand this any better? Any feed back is greatly appreciated. God bless you all.
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Old 01-01-2008, 11:09 PM #2
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Quote:
Originally Posted by boukness View Post
I have had four attacks this past year that have left me paralized on one side for more than 45 days at a time. This condition is horrible. I sometimes can't get out of bed. The light and noise hurts my head. I can't concentrate or think straight. I don't know much about this and my family thinks I am crazy. I know i'm not crazy i just need help. I go to sleep and pray that I will never wake up because it is so bad. I also have fibro and obstructive sleep apnea and do not know if they are related in any way to the BAM migraines. My Neurologist said I need to be stress free or I am a ticking time bomb. What does that mean? Will I die? I don't know what to do anymore. Can anyone help me to understand this any better? Any feed back is greatly appreciated. God bless you all.

Hi,
What do you for your BAM headache now? Do you have a Dx from your Neuro?
Are you on any Meds.? Do your use a breathing machine at night to keep your airway open for the apnea?

For stress I have found the Emotional freedom Technique(s) works. Look up EFT on Google then click on video and review some of the tapes for stress, headache ect....
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Old 01-01-2008, 11:16 PM #3
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I currently take 300 mg of efexxor daily, 160mg of inderal daily, 50 mg of topamax daily for the BAMs. I do have a machine for the apenia that I got 2 weeks ago. I am scheduled to have another test to make sure the setting is correct.
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Old 01-02-2008, 12:49 PM #4
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Quote:
Originally Posted by boukness View Post
I have had four attacks this past year that have left me paralized on one side for more than 45 days at a time. This condition is horrible. I sometimes can't get out of bed. The light and noise hurts my head. I can't concentrate or think straight. I don't know much about this and my family thinks I am crazy. I know i'm not crazy i just need help. I go to sleep and pray that I will never wake up because it is so bad. I also have fibro and obstructive sleep apnea and do not know if they are related in any way to the BAM migraines. My Neurologist said I need to be stress free or I am a ticking time bomb. What does that mean? Will I die? I don't know what to do anymore. Can anyone help me to understand this any better? Any feed back is greatly appreciated. God bless you all.
I personally think your Neurologist should find more appropriate wording to use, as I find the 'ticking time bomb' to be rather unprofessional and easily misunderstood. However, the way I'd take it if it were said to me is;

If I am stressed, I will have more headaches as stress is a well known trigger (for the standard type, of course). Furthermore, looking at stress alone shouldn't be the only thing here - you should be keeping a headache journal which many Neurologists give out so they can diagnose the type of headaches and migraines you have and associate any potential triggers (it can be from caffeine to almonds to yes, stress).

Did he give you any "emergency" medications for your attacks? I have Maxalt and um, I forgot (running to kitchen to check) - Amerge. I also have (I can't read writing, need to fill it still) - Elaxil for sleeping as well as Topamax.

From what my Neurologist told me and he was being very calm and rational was that women (as I am a woman, he gave me details pertaining to that) who have frequent migraines are at a greater risk for stroke. He was very adamant in controlling my headaches and migraines and then looking into the root of the problem. I also have seizures, however, I can count the number of times I've lost consciousness and hit the ground on both hands. My 'normal' seziures cause pain, numbness, paralysis, tingling, burning and other various sensations (including visual disturbances) which apparently originate in or around my occipital and parietal lobes.

If you're still having these episodes while on your medications I'd consider asking for a change in medications, further testing and/or a second opinion. Considering the duration of your paralysis, (not to scare you) it sounds quite severe and I would really look into finding a doctor who is willing to go ALL OUT in finding you some relief. In the meantime, you should ask for 'emergency' pills such as Maxalt, Amerge or Relpax (which are expensive).

Hope you find some help and relief soon.
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Old 01-03-2008, 01:41 PM #5
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Default you should get tested

not only for Lyme disease which can cause horrible migraines but for BABESIOSIS which can cause sleep apnea- and BOTH LYme & Babs can cause fibromyalgia.

So get tested for babesiosis and get a WB test for Lyme- that's my non-doctorly advice*)! I am a TBD Support group Facilitator and you sound positively... generic, not mysterious. Sleep apnea is common with Babesiosis, fibromyalgia ia common with Lyme & babs... headaches too-

Could not be related but it's an easy fit-
I had fibromyalgia for years and now I haven't had fibromyalgia for 7 years and counitng- it is great to live without pain!!!

Where do you live? tehre are different strains of babs and if you test for the wrong one you won't get an accurate result. What state are you in??
West Coast is WA1 Babs, East Coast is both MO1 and Microti in different parts- and Missouri is MO1...
Take care,
Sarah
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Old 01-04-2008, 03:10 PM #6
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I found this website and wanted to give you the link as it seems to be very informative and strictly for BAM information.

http://s-2000.com/bam/bam_treatment.html
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Old 01-10-2008, 12:03 AM #7
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You might want to consider asking your neurologist to check you for Hashimoto's Encephalopathy, which can cause bad migraines and one-sided paralysis. Most patients who have HE have NORMAL thyroid HORMONE levels- but highly elevated thyroid ANTIBODIES (which typically are not checked UNLESS your thyroid hormone levels are off first).
This is a new disease and so your neuro may not know about it yet.
Good Luck!
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