Fibro causing stroke like symptoms / panic attacks

Lightness1 Happy to have you here, but sorry about what you are going through. I don't think you should be very quick to accept this diagnosis. Have you gotten a 2nd or even 3rd opinion? I think it would be worthwhile. I would not be satisfied with their explanation. Do you remember what your mindset is right before you've had these attacks? Were you nervous about anything? Unless I freaked out before each and every attack, I would not allow Fibromyalgia to be the excuse for it. There is too much at risk. Have you seen a neurologist?

Hi, Lightness, and welcome!  I'm glad you found us and joined in.  No.  This doesn't sound like fibro at all.  You might be having TIA's (mini strokes) or Bell's Palsy.  I've never heard of this before with fibro.  I'm not a doctor but I sure would search out a good neurologist.  This isn't normal for fibro.   

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good info about fibo and you will learn a lot there.  Good links you need to check out are called Symptoms and also A Thorough Explanation of Fibromyalgia.  There is another link called What Else Could It Be.  You will not see any illness that causes black outs or face drooping.

 

Please be reevaluated.  Also, let us know what you find out because we really do care about you.

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions becaue we are here to help you.  Hope to hear more from you soon.

 

Sherrine

Thank you every for taking the time to reply and for your concern, I am very grateful. I will try and give some more information out to see if that paints a clearer picture.

I am 33 year old female from Australia. My initial diagnosis was from a Rheumatoid Arthritis specialist telling me that it is Fibromyalgia 4 years ago. The reason for this is because I do experience constant whole body pain. However I agree that it does not explain the fits. I feel like it is the intense pain that is causing the attacks, almost like it is looking for some release. No medication eases the pain and when it hits a certain point I cannot talk and my face droops, goes numb and my body shakes. Usually I have learned that resting will ease the pain and I will recover to the point where I can walk around again and my face will go back to normal. These attacks happen almost once a day, sometimes in my sleep and always leave me feeling worse than before the attack in terms of pain and 'foggyness'.

While these are a daily occurance I have experienced more severe forms that leave me with paralysis like feeling always affecting the right hand side of my body. My last severe attack was in December last year where I was admitted to the ER and had all the tests re-done with the same clear results. I was admitted into a rehabilitation clinic for two months before moving to in-home rehab for 6 weeks and then community appointment rehab which is finishing next week. The reasons for the rehab was because I was unable to walk, my fist was constantly clinched and my body would not respond to my thoughts for movement. The doctors had no explanation for these events and put it down to my bodies response to 'pain' caused by fibromyalgia.

This diagnosis been echoed by my GP's and other specialists (including neurologists) have gone along with this because they can't explain it. I have seen and tried to obtain answers many times over the years, usually after a severe attack. I have had doctors tell me that it is a 'medical mystery' and they can not explain what is happening. This is because all tests I have done (CAT, EEG, X ray, Blood Tests) have come back clear on numerous occasions.

Stroke has been ruled out, TIA ruled out as well as Bell's Palsy on more than one occasion. (Thank you for thinking of other causes)

Other -
+ I do have high blood pressure which I am taking medication for. (this is the only medication I am taking)
+ I have osteoperosis however the pain is not typical for osteoperosis patients as I have been told.
+ The only things I take are calcium/vit D tablets and Kaprex.

I fractured my Sternum along with a hairline fracture in my T5 vertabra in a car accident 8 years ago, however the pain and attacks have only been happening for the last 4 years. All scans haven't shown anything else abnormal.




Ak Angel & applevenus - I would like to know what was going on before the symptoms appeared?
I feel there is no concious warning. I could be watching TV, in the middle of a conversation, in my sleep and whether I am feeling good or bad. I don't feel any sense of panic leading up.

I am worried about the blood clotting due to my HBP, what sort of test confirms this ?


Thank you again everyone, if anything comes to mind please don't hesitate to share. Any information is better than none. I have followed the Fibro info links and there are many things that I can relate to but I will read more and be in touch if anything else sticks out.

Bless
Lightness1

Post Edited (lightness1) : 9/6/2011 6:13:32 PM (GMT-6)

Hmmm...When did you start taking the blood pressure medication you currently take? What was going on around the time you had the first attack, anything you can remember that could have any bearing? Have you ever tried a different blood pressure medication?

Do you ever track what you eat? Just an idea, it might not bring anything, but it wouldn't hurt to keep a record of everything you eat and note/chart the exact times of day when you have the attacks, and maybe a pattern would emerge. If I were you, I'd even track the temperature/weather...anything that could possibly matter.

You just might find a pattern with your menstrual cycle, the weather, and what you eat...might be an iffy pattern. Just going by myself here, I would be going mad with what you are going through...I would have to start some kind of tracking just to feel that I am working on a solution even if everybody else has thrown up their hands. That's just unacceptable to me.

Lightness,

I'm sorry to hear what you're going through. My brother had similar problems when he was about 10 years old. He was having neurological problems but no Dr. could figure out what was happening or the cause. It took months, millions of tests and finally he went to the Mayo Clinic in Minnesota. In the end they found out that he had Wilson's Disease. A rare disease that effects the liver. Your body is unable to dispose of copper so it accumulates in your liver, brain and other organs. The disease usually presents itself in infancy and usually is not caught and can often be fatal. It was rare that my brother didn't present symptoms until he was 10. He was a medical mystery, had teams of Drs. all over the world working together on his case and was posted to the internet for opinions. Essentially his nervous system had gone haywire, his blood pressure was dropping so he would pass out but his brain would still be awake. His hands were stuck in a clutched tight position. He had boils on his skin. His body went crazy. Now that he's been on medication it has been controlled. He needs to be closely monitored to ensure his copper levels are always in control, but no one thought to look at a disease like that because the chances were so rare and his symptoms were atypical.

I share the story because I encourage you to go to a hospital that will get to the bottom of your case. I don't know if you have anything like the Mayo clinic in Australia, but that is truly the best place for "medical mysteries".

Good luck and I hope you get answers and the remedy is a quick and easy one.

On a different note, ak angel... do you have Factor VI deficiency by chance? I have Factor XI deficiency, so I have the opposite problem, my clotting factor is only 2% and 100% is ideal. My whole family has this genetic mutation. I was just curious because it sounds like we're on opposite ends of the spectrum.

A teaching hospital would be a great place to go.  Here is a link from Fibro 101 that will help you see if you have a teaching hospital near you.

 

http://en.wikipedia.org/wiki/List_of_university_hospitals

 

Sherrine

Hi applevenus I agree, it isn't acceptable and it is putting my life on hold at the moment. I think posting on this forum and getting different opinions is the most positive thing I have done.

I have only been taking the blood pressure medication for 3 months. In terms of diet, I am severely allergic to Soy. I have tried a Paleolithic diet for 6 months and took out wheat and gluten however I need to keep Dairy in for the calcium.

Frankey - I am glad your brother was able to find out what was the cause. I would have never thought that something like that could be due to copper. I will mention Wilson's disease to my GP and see if that line of thought opens any ideas to something similar that could be the cause, maybe another heavy metal or allergy. I actually have most of the syptoms of Wilsons, including easy bruising..


I am working with a qualified doctor that is also a naturopath for a different perspective. I have been to two Hospitals that are on the 'Teaching Hospitals' list but unfortunently they do not share the same enthusiasm for finding out what is going on. I don't think that Australia shares the same inquisitive nature that American teaching hospitals may possess. Here it is more about getting you out of the door because they don't know what is wrong and you are a burden on the system. I would love if a team of professionals could really investigate my case but really lack the financial resources to go down that path as I don't have private health insurance.

What is most interesting for me is that no one else (so far) with Fibromyalgia experiences these 'attacks'. Which leads me to believe that it is something else going on. I have had doctors tell me that it is 'all in my head', and is caused by anxiety and stress. I am not sure how credible this is as the physical results are just so severe it is hard to accept.

My first blackout occured 6 years ago on my Mom's birthday where I was perfectly fine before hand. The blackouts wern't accompanied by pain for another 2 years.

At this stage I think it would be great to get as much feedback as possible as to what 'could' be causing the problems, and then taking these to my GP to get referrals and tests.

Thank you everyone,
Lightness1

Have they done a tilt-table test?

I had a seizure last Friday and I came across something called Psychogenic Nonepileptic Seizures.  Google that and see if that sounds like any of your symptoms...

Sydney723

If you start a new thread, other members might be able to better respond to your post.

You did not state whether you have talked with your family or medical professionals about these panic attacks..
Speaking just as a mom I think someone should either go with you (your family)
or provide some type of report (doctor or other medical professional)
For the school nurse.

You will feel more comfortable &, as a former teacher myself, it is good for school staff to be prepared.. & they will be discreet... one of my students had epilepsy & the school nurse advised me of how to help him when he had a seizure.

I have had a few panic attacks when I was under a great deal of stress
(Family member was dying & I felt so hopeless.. ).. I was able to meditate & breathe deeply & never sought medical advise. Yours are different & I think other members can provide more specific advice,

Bless you sweetie & know that you can be helped.