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Wife has had seizures, intense migraines, vertigo, loss of bodily function /motor skills for 15 years undiagnosed


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#1 Troyswagerty

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Posted 21 October 2014 - 03:13 PM

My wife has recently been accepted to go to Johns Hopkins for review. For 15 years she has had seizures, loss of ability to move parts of her body at times. Inability to speak at times from motor control loss, vertigo, intense migraines where she has wept with big tears for years almost every night. A recent blood test revealed scleroderma in her blood. I hope this will help the John Hopkins doctors in their review and solution.



#2 Shelley Ensz

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Posted 23 October 2014 - 12:33 PM

Dear Troy,

 

Welcome to Sclero Forums.  I'm sorry that your wife is so sick.  I think it is marvelous that she will be going to Johns Hopkins and I am sure they will do their best to provide some answers for you both.

 

I also suffer from migraines, but they are in very large part both preventable and treatable nowdays. Right now, I choose to just treat mine as soon as I am aware they are starting. 

 

I also have identified many of my triggers so I know how to avoid them when necessary.  For example, some times (okay, most times) I cannot tolerate very certain repetitive noises, like the beat in some songs. So as soon as I realize it, I can remove myself from the situation or, if that cannot be done, ask for the music to be turned off.  I once had a dentist with a stereo system throughout the office and they happened to play a lot of music with that certain steady beat, even in the waiting room. They finally knew to just turn off the stereo system whenever they saw me. It was embarrassing for me to ask for special accomodation, but it was also a small price to pay next to an unrelenting migraine OR for being forced to take medication for something that could be avoided. Thankfully, most music is fine for me, but any genre and even songs I love can harbor that certain beat.

 

Even when migraines are caused by an underlying illness, they still can often be managed by reducing triggers, preventive medication, and immediate medications when an attack begins anyway. Since they can severely impair quality of life, it is worth paying a lot of attention to resolving them.  So make sure that no matter what else goes on, that your wife gets a thorough migraine evaluation and treatment program.

 

Many of us need to try many things before finding the right combination to alleviate them.  For me, I need to sleep well, get lots of early morning sunshine, eat regularly spaced meals, focus on healthier foods, be careful with some foods and beverages and avoid some altogether, get gentle activity, reduce stress, avoid TV (the noise and flashing lights wear me down, making me more vulnerable), avoid all bright screens for a spell before bedtime, and increase relaxing things, like dim lights, candlelight, drink calming teas (like chamomille), reading funny or calming books, meditate, laugh a lot, do artwork, etc. I also need to keep my blood pressure and insomnia under control, one way or another.

 

Altogether, those things improve my life in general, and are also good for scleroderma or other health issues and they make for a happy life, which is especially more joyful on any day without a migraine.  When those measures don't work and I start getting one anyway, then I immediately take my meds for it, and rest for a spell and take it easy, as I still seem to be more vulnerable to them for awhile afterwards.

 

Well, now, I've written nearly a whole novel on the subject!  What I'm trying to say is that your wife's migraines have not been thoroughly addressed yet and there is hope for them to be alleviated, at least a little bit, with the right specialist and lifestyle or treatment regimen that works for her.  Mind you, all migraines are different and so are the causes or triggers so everyone needs to find their own solutions.  In my case, it requires a many solutions at once, so it was very hard to figure out, but it is what it is, and I am glad to have found a combination that alleviates them for me.

 

Scleroderma can affect the central nervous system, so that might be what is happening with your wife. But it could be something else entirely, and sometimes we can have a whole variety of things wrong without having any single disease causing them all.  So you are definitely doing right by getting an expert evaluation to see what it is in her case!  See Scleroderma Brain Involvement for more info, as well as Causes of Migraines by the Mayo Clinic.

 

I wish you both well and will be sending good thoughts your way. And you and your wife are both welcome here for support, of course, even if scleroderma is not the underlying culprit in your wife's case.  In any event, she is sick, no matter the cause, and you both need support, and that is what we are here for.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 23 October 2014 - 10:45 PM

Hi Troy,

 

Welcome to these forums!

 

I'm sorry to hear that your wife is so unwell and is suffering so many horrible symptoms. Thankfully, I don't suffer with migraine headaches, but I understand how upsetting and debilitating they must be.

 

I'm afraid I can't really add anything to Shelley's wise advice, but I can join her in welcoming you and hope that your wife will benefit from going to Johns Hopkins and that they will be able to help her.

 

Kind regards,


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#4 quiltfairy

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Posted 24 October 2014 - 01:22 AM

Hi Troy,

 

I also have migraines; mine are subject to climate change and they are called cluster migraines and low light helps. Most of the time I go to bed and sleep for awhile, that seems to help me most. My doctor gave me a prescription of caffeine pills and it helped.

 

Shelley had a lot of good advice; I hope they can help your wife at Johns Hopkins.

                             

I wish you and your wife the best.



#5 Amanda Thorpe

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Posted 25 October 2014 - 01:32 PM

Hello Troy

 

I used to suffer with migraines and unless you have had one, or a married to someone with them, you have no real understanding of how painful, debilitating and downright awful they are. They have to be fully investigated to see what can be done because, as Shelley has said, there are possibilities to improve them.

 

Scleroderma can wreak havoc with parts of the body we don't think about like the CNS (central nervous system). We tend to think of it in terms of fibrosis on the lungs or heart or skin but it can do so much more.

 

I've never hear of caffeine pills for migraine but I guess it's the same principle as it being added to over the counter pain killers. I have to say if I still had them I would take anything and everything to be rid of them but please remember that caffeine is bad for Raynaud's and remember that in people with scleroderma, Raynaud's can lead to blood vessel damage.

 

Take care.


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#6 judyt

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Posted 25 October 2014 - 07:10 PM

Hi Troy,

 

I, like Amanda, am or rather was a Migraine sufferer.   In fact it was one of my first problems when the Scleroderma started to get going.   I had them twice a week at least in the end and after 35 or so years I was thoroughly fed up with the whole business. 

 

Yes I also had meds. containing caffeine as part of the mix.  

 

Once I was diagnosed officially with Sclero and started to get some proper treatment for the Raynaud's my headaches disappeared, they just went poof.   No warning or reason why, I just suddenly stopped getting them.   After a few weeks and a lot of thinking I put the disappearance down to a medication called Amlodipine.   Since then I have proved that it is the magic bullet for me by stopping it and re-starting again.

 

It is a rare and unusual result but it works for me.

 

Best wishes for the future

Judyt



#7 Shelley Ensz

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Posted 27 October 2014 - 04:32 PM

Hello all,

 

Whenever possible, I take a very strong cup of coffee at the start of any migraine, or meds with caffeine. Yes, as Amanda very aptly pointed out, caffeine can trigger Raynaud's so it is best avoided or used conservatively, depending on one's situation at the time. Maybe its bad of me, but I'd rather have Raynaud's than a migraine, and my Raynaud's at the moment, knock on wood, is largely under control. See Raynaud's Prevention.

 

But I have to say, yes, caffeine is definitely a caution, but if it is not otherwise abused and if Raynaud's is largely under control, it might be helpful at the very beginning of an attack. BUT, migraines can also be caused by caffeine withdrawal!  So it is very worthwhile to pay close attention to it, either as a potential cause or helpful part of a migraine treatment program.  See Migraines, Headaches, and Caffeine by WebMD.

 

Caffeine or not, I think we all agree, migraines are a great thing to avoid altogether or treat with alacrity, whenever possible.

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#8 Amanda Thorpe

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Posted 30 October 2014 - 03:13 PM

Oh yes...I have had a migraine caused by caffeine withdrawal! If you want to cut out caffeine do it slowly and expect a headache but the quicker you do it the more severe the headache, well at least it was for me! What a thumper!

 

Take care.


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