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Brain Involvement or Not? - Trying to Find Answers!


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#1 JANQ

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Posted 14 February 2009 - 03:10 AM

Hello everyone!

I could really use some help with others on this topic!

I have been experiencing frequent, all-day headaches for a couple of months now. I get these headaches sometimes everyday. Once in awhile, I will be headache free in the mornings, only to have them start in the afternoons and last until bedtime. I also will awaken with these horrible, pounding, painful headaches in the wee hours of the morning. Tylenol is the only pain reliever I can take, which does not help. I am currently on Plaquenil, Prednisone, Protonix and thyroid medication (two month on the medications).

I was headache free for approximately two months before they began again, but prior to this time, headaches were an every day occurrence. I also have had frequent migraines.

My non-migraine headaches are pounding and very painful. The veins in my temples pop out and throb with my heartbeat. Are these vascular?

Other neurological problems are an increase in short-term memory loss, trouble with spelling (I frequently will begin each word with the second letter, then have to backtrack and insert the first letter), and a change in my personality, which has been quite noticeable according to my daughter.

I have been experiencing frequent episodes of feeling "lost" when I enter a room, standing stupidly trying to remember why I was in that room, leaving then re-entering the room only to feel "lost" again. I also find myself unable to think, telling myself to "think, think, think." My rheumatologist asked me about brain fog, however, without knowing what brain fog is, I was unable to answer. Is this brain fog?

The headaches are not new to me, I have been experiencing these for at least 10 years or longer, but the other problems began about a year and a half ago.

Do I possibly have brain involvement with my autoimmune disease? If so, how is this diagnosed? What types of tests are involved? I have brought these problems up with the rheumatologist, and more recently with the P.A., but no tests have ever been ordered, and no feedback on these problems have been given to me.

Should I be pursuing these issues with my doctor again, or drop them?

Thank you for your feedback, support and advice since I have been with the forum. I can't even tell you how much it means to me! (tearing up, even with dry eyes!)

Janet

#2 Sweet

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Posted 14 February 2009 - 05:55 AM

Hi Janet,

My heart goes out to you because I know how you feel!!! I have been going through the exact same thing for two weeks. I however also have severe dizziness and I've passed out twice. I have severe brain fog, but it's much worse than normal and I feel electrical surging type feelings constantly through my head. It's pretty much freaking me out. I'm going to the doctor on Monday, so if he sheds any brilliant light on this, I'll share with you. I would imagine, he'll want to do tests, scans etc to rule out M.S., brain tumor, or some other horrible thing. My mind is running a muck at this point. I have LUPUS, CREST and SJOGRENS.

More later when I know more.

Hang in there.
Warm and gentle hugs,

Pamela
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#3 Penny

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Posted 14 February 2009 - 06:17 AM

Hi, Janet-

It sounds like you are experiencing "brain fog", but with the headache involvement I would suggest seeing a Neurologist just to rule out any neurological issues.

I know what you mean about short term memory loss (it tends to make us a little cranky, especially when we are trying to do something and someone dares to breath in our space because they interrupt our train of thought and once you get off the train it might be gone for good), the hubby cringes at the thought of coming near me when I am on the computer typing and backspacing away (when I start writing something and forget what I am trying to say half way through the sentence).

I no longer drive (for some reason they do not want a dizzy woman behind the wheel of a mini-van when her world tilts to the left) which is a good thing because I will be riding along in the passenger seat and all of a sudden not recognize a single thing around me... it might be a street I have been on hundreds of times but at that moment it is not recognizable. Luckily we have a GPS, so even if I don't know where I am it does. (I may be weird, but I find the little voice saying "You have arrived" as a wonderful affirmation)

To cut off my own rambling (I tend to just keep going and going in the hope that what I wanted to say when I started might come back to me or mysteriously appear somewhere in the prose), yes, you should definitely bring your new symptoms up to your Dr.

:D
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#4 JANQ

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Posted 14 February 2009 - 06:20 AM

Oh, Pamela! You, too? I am so sorry! It is scary, isn't it?? I HOPE your doctor can help you, at least shed some light on it!

I am not having severe dizziness, just occasional dizziness.

You brought up something else that I have been experiencing, those weird shocking feelings in my head! They feel like, shock, shock, shock, shock! Do yours feel like electrical shocks in your head? I did bring these up with my rheumatologist about 3 months ago, but he didn't seem to pay attention. I see him again in about a month.

Thank you for sharing your experiences! I had thought the shocking feelings were all in my head!

((Big Hug))

Janet

#5 JANQ

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Posted 14 February 2009 - 07:40 AM

Hi Penny:

Thank you for your response! Okay, I will bring these issues up with my doctor. I have a tendency to "clam up" if my comments are not acknowledged.

I will be more persistant in my questions to my doctor, and getting responses. I haven't yet taken the reins into my own hands, but thanks to the forum, I have been realizing that it is up to me, if they aren't doing what I think needs to be done!

My BIG problem with the first time I saw my rheumatologist was not making a list of symptoms. I couldn't remember what had been happening to my own body. He would ask questions, and my answers would be..."I don't remember!" It was not only frustrating for him, I'm sure, but even more for me.

I also have had my dizzy spells while driving, and they have scared me to death. I have found myself hanging on to the wheel for dear life, while attempting to find a place to pull over. So far, I do remember where I am going (phew!), and how to get there, most of the time! (I don't have a navigation system :huh: )

Why in the world don't doctors ask questions in a way that a non-medical person can understand? I had no idea what brain fog meant!

Take good care, Penny.

Janet

#6 Sweet

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Posted 14 February 2009 - 10:07 AM

Hi Janet,

YES that is exactly what the shock feelings are like. My rheumatologist kind of blew it off, but that is his nature. My primary care provider is my rock and he is who I will see Monday. So hopefully I can get information for the two of us!
Warm and gentle hugs,

Pamela
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#7 WestCoast1

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Posted 14 February 2009 - 11:37 AM

Hello Janet,

I cannot tell you how sorry I am to hear that you are suffering from headaches/migraines. I don't really know how these corrolate with autoimmune disease activity, but my guess is that they are all somehow connected.

I began my search for relief from migraines many years ago. MRI's show white spots...non specific, neurologists say they are what is left over from some serious migraine activity. I have asked if they are connected to the Scleroderma, and really get no straight answer. On the other hand, I have seen doctors (not rheumatologists) that say if "If you would get your autoimmune disease under control, your migraines would get better".....this is a false statment, in my oppinion.

As for brain fog, I would say you may have a little of that. It is so hard to pin point brain fog. You may feel "foggy" from having so much on your mind or medication. I tried Topamax for a few years for my migraines, and the brain fog was super heavy...once off if it, I regained some of my mental capacity....what little there is left :-) So many things cause this side effect. Never the less, it is no fun no matter what the cause.

My guess is that the doctor will try to rule out many things that cause you to be dizzy, with headaches, brain fog, and the shock feeling. Those things are all so uncomfortable, and seem to come and go as they please...I hope your's "goes" soon. Keep up your persistence and positive outlook.

What medications have you tried for your headaches over the years?

Hugs~
erin
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#8 Amanda Thorpe

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Posted 14 February 2009 - 01:57 PM

Hello Janet

You've raised symptoms similar to a lot of us, the brain fog has been in many a post. I don't know if it's the sclero or the stress of living with a serious illness but my mind does not operate as effeciently as it once did, oh yes it operated efficiently once whatever anyone says! :lol:

As far as personality changes...hmmm...might that be because I have a terrible disease that's altered my life, I am always in pain, always tired and always itch?!, having said that meds can effect behaviour as well. It helps others around you to acknowledge the behavioural changes and accept that although you have no control over it you are aware of it impact and realise it doesn't give you licence to do whatever. I recently started a new med and to say I was agitated is an understatement so I told my husband what was going on which he appreciated and could then work with me.

I too am having headache/migraine issues after them being practically non existent for a 7 years respite period. Vascular headaches are a group of headache in which blood vessels dilate causing pain, this includes migraines, cluster headaches, and toxic headaches. As you can see I have been reading up on it! I don't know if sclero plays a part, there was some study in Russia where a lot of sclero people also had migraine but they could not determine migraine as a sclero symptom on one small study.

I hope you get some answers, my rheumatologist said to see a neurologist but I can't be bothered and when I saw one some 20 years ago he said keep taking paonkillers and try yoga. I laughed in his face and walked out.

Take care.

Amanda

P.S. Tearing up even with dry eyes...love it!
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#9 JANQ

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Posted 14 February 2009 - 02:16 PM

Hi Erin:

Thank you for your very nice response and concern. I am so sorry to hear that you are also a migraine/headache sufferer. I wish I had a magic pill to help all of us! They can be so debilitating!

In 1986, I was given a prescription pain reliever for the headaches. At that time, I was not experiencing migraines, just severe headaches. If I am remembering correctly, the side effects were so bad that I quit using it. In 1987, I was given Meclizine for dizziness. I had been diagnosed with Labrynthitis which lasted a year.

I started having migraines about 14 years ago. They started as severe and often. The severe ones scared me and were several hours or even days in duration. I lost my sense of coordination with them. I would test myself, by trying to touch my fingers together in front of my eyes and would miss wildly. Hour after hour after an episode, my fingers would slowly get closer and closer until finally I could touch them and my coordination would go back to normal. I had an MRI when they started, but it didn't reveal anything, and I wasn't put on any medication. How interesting about the white spots. My MRI did not reveal white spots, but I had the MRI fairly soon after I first began experiencing migraines. Are the white spots caused from severe migraines after years of suffering?

Since then, I have tried nothing but over the counter pain relievers, and abstaining from certain foods such as coffee and chocolate. I also tried other methods of relief, such as drinking large amounts of water, massaging the fleshy part of your thumbs, etc. Nothing helped until I read an article about using hot and cold compresses to relieve a headache. The article said to put a cold compress around your neck and the heat at your feet, to draw the blood away from your head. Surprisingly, it helped quite often with the migraines, but as of late, nothing has been helping, which leads me to believe that it may be the medications that are the culprit.

I do hope that my doctor listens this time and can rule out the reasons. It would be nice to cross off one concern from my list.

Many warm wishes your way, Erin.

Janet

#10 Margaret

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Posted 14 February 2009 - 02:18 PM

<<it's much worse than normal and I feel electrical surging type feelings constantly through my head. ..........You brought up something else that I have been experiencing, those weird shocking feelings in my head! They feel like, shock, shock, shock, shock! Do yours feel like electrical shocks in your head?>>

Oh my goodness, Sweet....Gareth's been complaining for months about his head 'çracking' . It doesn't hurt, just cracks. It is especially bothersome when he lays down to go to sleep at night.

Take care, Everyone.
Margaret

#11 Sweet

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Posted 14 February 2009 - 05:25 PM

Oh Margaret, mine is worst at night too. It never ceases to amaze me how common some of the weirdest symptoms are amongst us with Sclero.... I feel for Gareth!
Warm and gentle hugs,

Pamela
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#12 debonair susie

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Posted 15 February 2009 - 09:02 AM

Hi Janet, Pam, Margaret, Penny, erin and Amanda,

Janet et al,

I am so sorry we have this going on among us! You are so right, when you say that these headaches can be so debilitating, as I can totally relate!

Several years ago, I was in a vehicle accident. The car behind me ran into my vehicle while it was going 35 MPH and I was at a stop, with the very large vehicle ahead of me also at a stop waiting to turn left. From then, on I started having (aura) painless migraines, which must have been caused by the whiplash effect.
Unrelated (I'm quite sure), I started having migraines, which didn't come or last often, but over time, increased remarkably. Short of going to a neurologist, my doctor did various things, to try and get to the bottom of the migraines, without any findings.

I began noticing that every time I drank a diet soda, I would feel unwell and later, I would end up with a migraine, to last anywhere from a day to six days. I eliminated the soda and voila'!... no more migraines! Please bear in mind, this was my OWN self-discovery, realizing my allergy to an ingredient in the diet soda.

I also have experienced the shocking shocking shocking. Unfortunately, I didn't take note of what was happening, at the time that may have caused it. I see my internist on Wednesday, so I'm going to visit with her about it!

I'm really glad you brought this up, Janet. I hope, that with our heads together, we are able to find out what's going on, or at least, pass the information on that we find out, relevant to our own situations.
Special Hugs,

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#13 Penny

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Posted 15 February 2009 - 09:58 AM

Hi all-

The topic of migraines has really made me think.

I used to suffer from severely debilitating migraines as a child (from about 7 until I was 17) and discovered through trial and error what my "triggers" were. I did this by keeping notes of what I ate and drank and it seemed that some of the same things were listed on the days I had headaches.

My triggers are - all artificial sweeteners (you have to be very careful, because manufacturers will sneak it in some products that have real sugar to boost the sweetness without increasing the calories), artificial orange flavoring and bananas.

The bananas came as a surprise, I had my first migraine in over a decade after eating a peanut butter and banana sandwich one day and dared to test it a few weeks later and boom, the banana triggered a migraine!
Triggers can change, but keeping a diary of your headaches and what you eat and drink that day can help you possibly find triggers and might help in decreasing the frequency of your headaches.

I have been very lucky that my migraines have gone from full blown to ocular migraines that are completely painless even though when I had my first one it scared me half to death because I thought I was having a stroke.

I don't think I have ever had any shock like feelings... the only headaches I have these days are either sinus (thanks to chronic sinusitis) and what I call shotgun headaches. The shotgun ones come on so fast I often flinch and grab my head while ducking because it literally feels like I I have been shot in the head or hit upside the head with a bat complete with a "bang" feeling. Those headaches only last about ten to twenty minutes and I think they are probably brought on by a blood pressure spike.

For those who want to know what an ocular migraine is, it is like seeing a pinpoint of light that slowly grows with an irregular zig-zagging rainbow like outline, the inside is often pure white or gray and blank. This shape grows until it completely blocks out all vision then fades out. The whole thing is painless and lasts about 20 to 40 minutes and almost always happens in just one eye.

:D
Penny

#14 JANQ

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Posted 15 February 2009 - 02:31 PM

Hello Everyone!

Wow! Interesting point about the artificial sweeteners. I have been using saccharin for probably my whole adult life. When one of the latest sweeteners came onto the market about 4 to 5 years ago, I started using it, and at that time found that my headaches became so terrible that I would cry. As soon as I stopped using this particular sweetener, they became just the normal headaches I had been used to dealing with.

I think that I will keep a food journal, to see if there are triggers with particular foods. Very good idea!

Now, the topic of artificial sweeteners brings up another question. A friend of mine swears that if I stopped using saccharin, my autoimmune disease would be cured in two months! She does not have an autoimmune disease, but firmly believes that artificial sweeteners are the causes of several diseases. Has anyone heard of this?

I drink diet soda quite often, because soda is the only drink that seems to give me some relief from my dry mouth. I don't want to drink the sugar sodas, and tried drinking only teas for a period of about 6 months, but did not get relief, so I went back to diet sodas.

Penny, I am glad that you are not having your painful migraines but sorry that you are having any at all, AND I am also glad that you gave a description of ocular migraines. My daughter has those, and our opthalmologist said she was just having migraines, fairly common in young kids. They scare her to death, also! She describes them as a gray bubble that rises from the bottom of her field of vision, until it completely blocks out her vision. I panicked the first time it happened with her, thinking anything like that had to be the worst possible cause!

I have learned so much from everyone!! Thank you to all!

Best wishes,

Janet

#15 gigi08

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Posted 15 February 2009 - 02:54 PM

I went through a phase of having really bad migraines and would end up going to the ER and needing 2 shots to help it and being so sick. I was experiencing bad dreams also. I was also drinking diet soda made with aspartame and fat free sugar free puddings and after I quit those and got that out of my system, the migraines have gone and I very rarely get headaches. I have found that I can use the sucrolose but anything containing aspartame I stay away from. I know this may not be the case for others, but definitely something to think about if you're getting migraines.
Gigi
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#16 WestCoast1

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Posted 16 February 2009 - 03:35 PM

I have to agree with all of you that the artificial sugars ARE a trigger for my migraines along with red wine (waaaaaaa for me!) and the once a month thing. There must be more since I still get them, but I have kept a 6th month journal and have had no other clues as to what else might be causing them.

I do get the aura and know right away that a doozy is coming, at least I get a warning before the storm.

I may have mentioned before, but Fioricet seems to be working at least 80% of the time for me. If I catch the migraine right away, I have a chance of avoiding a full blown migraine...if not, I am in bed for a long time.

Best of luck to all of you migraine sufferers out there, never give up trying to find a solution!!!

Hugs~
erin
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#17 Sweet

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Posted 18 February 2009 - 05:14 AM

OK Girls,

No great big news about the headache, dizziness and brain shocks. He did a bunch of lab work to basically see if I'm in a flare. (I feel like I'm always in a flare, so if a real one comes along I'm toast) He is scheduling me for a brain and neck CT. His sense is I have a herniated disc at C-1. Nice....he's scanning the rest of the brain to make sure it's there :wacko: and to make sure nothing is there that shouldn't be.

So, sorry I wasn't much help. I'll let you know the results.
Warm and gentle hugs,

Pamela
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#18 razz

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Posted 18 February 2009 - 08:55 AM

Janet,

I agree that we've all experienced brain fog and personality changes. I had one doctor who acknowledged that the brain does become affected with scleroderma. So I guess besides being hardheaded, I also have a hardened brain. I know my personality has changed, like Amanda says, how could it not change aftering being diagnosed and having to live with an autoimmune disease. I've had people or family members say I've changed. Obviously they don't understand it's not easy accepting an autoimmune disease into your life. I've gone through all the emotions you can think of and settled on a slower moving, low key version of my old self. I'm not the fastest talking whipper snapper of the midwest but my brain is still sharp (even though it fades in and out like an old television set) and thank goodness I still have my old wit to keep me amused.

As far as headaches or migraines, I don't usually get them (never had a migraine), at least hardly ever before my scleroderma diagnosis. I know there are food triggers that will cause headaches and migraines. For me, if I do get a headache now it's usually stress-related and lasts on and off for days. As soon as I get rid of the stress, the headache is gone too.


Razz
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#19 TJ903

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Posted 18 February 2009 - 09:20 AM

Sorry to hear about so many of us with migraines. Is it brain fog, pill effect or sclero? We may never know. I am so surprised to hear others have the 'shock' syndrome. I've had it for about five years, if this is sclero related it may be one of those mis-interpreted symptoms. I was diagnosed 01-04-07, maybe it should be 01-04-02?mmmmmmmm. Gives us pause to think. We don't need any more issues than we already have.

I hope that everyone can find relief for those migraines - mine are doosies, but can't seem to pin-point the cause. I'm lucky in the fact that they don't last longer than 24-48 hours. After reading the posts, there are now things for me look out for.

Love this site and the folks in it!!!

#20 Margaret

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Posted 18 February 2009 - 09:48 AM

Brain shocks...I just want to let you all know that Gareth had Keppra added to his seizure medications 2 weeks ago and his 'brain cracking' has stopped. He started with seizures a year ago. So has anyone seen a neurologist for seizure disorder concerning their 'shocks'? Gareth's seizures aren't the 'normal' type but the blank stares for fleeting seconds or slight quivering of hands, etc, now called absence seizures. Does this sound like some of your 'brain fog' moments. Seizures can be present in UCTD. Just an idea -- a bummer one at that, too.

Take care, Everyone.
Margaret