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Need help for my 16 year old sister in law (Migraines, blackouts, loss of breath)

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Posted 5/12/2004 2:53 AM (GMT 0)
I have been searching for an answer and explanation but have yet to find one.  My 16 year old sister in law has been having these symptoms for nearly 3 months now: migraines, blackouts, and just recently difficulty breathing when she begins to have a blackout.

She has been blacking out at random times, with no warning.  Yesterday was the worst yet, she blacked out 11 times.  She is having to gasp for breath when she has a spell too.  Right now she is in the hospital and on an IV medicatoin (not sure which one, I'm getting this info from my mother in law)  She has been there for over a day, and has yet to respond to the meds. 

The neurologist and cardiologists are all at a loss for what is going on with her.  Apparently this isn't something they've dealt with before.  They have found out that her brain is sending the wrong message to her heart which tells it how many or how often electrodes to release.  They say this causes her blood pressure to fluxuate which could be causing the blackouts.  however, they have yet to find what is causing the brain to send the wrong message. 

I am hoping that someone somewhere will have had this same problem or known someone who hsa and be able to tell me what the diagnosis was.  Thank in advance for any information!

Posted 5/12/2004 12:17 PM (GMT 0)
I probably don't have any helpful info for you. But I wanted to clarify something--Are the blackouts and difficulty breathing only happening during a migraine? Or does she just have migraines sometimes, and you mentioned it as added info about her medical status?

I'm not positive, but I believe that fluctuating BP CAN happen during a migraine. It may be just a really rotten case of migraine (if the blackouts and gasping are happening only during a migraine). Or it may be more serious. She is in a good place, in the hospital, and probably seeing the best of the best at that facility and maybe in town (depending on where you are). Well, you say she's been there for a day, so she may not be seeing the best of the best, yet. But with any unusual case like this, Drs often have a professional curiousity, and want to work that much harder to solve it. So in that sense, she's getting great diagnostic work, and it will continue. Just because nothing has been determined in a day, doesn't mean they're not going to find anything. So keep your faith and hope alive, and please convey this to her and her family as well. I'll be having positive thoughts for you all, and hoping the Drs will find a cause for her symptoms, as well as an effective treatment, very soon. Hang in there! All best.
Posted 5/13/2004 4:11 AM (GMT 0)
Well, the headaches never really go away.  They are always there, even if dull. I believe when this first started a few months ago, the headaches were not as bad as they have become now.   She has seen several dr's in the past couple of months.  They started with cardiologists, and just recently were able to get referred to a neurologist.  So, it hasn't been just a day that they have been seeing here.  That's just how long she's been in the hospital.  The reason she went is because the difficulty breathing during the fainting episode was getting worse and she had 6 blackouts, and then 5 more by the time she got to the hospital. 

I think this is too frequent to be just due to migranes.  They are trying right now to get rid of the migraines and then see if she still has the blackouts.  Until they do that, they will not know for sure of the connection I guess.

Thank you for your comments, I do appreciate them.  Thank you for your thoughts as well! 

Posted 5/18/2004 12:56 AM (GMT 0)
Oh, I see. I didn't realize the symptoms had been ongoing. Wow. Well hopefully she WILL be seen by some of the best Drs, now that she is in the hospital....if she is still there, now several days later. I hope some progress has been made, with sorting through the meds, and that some knowledge about her condition has been gained, and some symptom control has been achieved. Still keeping everyone close in heart and thoughts, and I'm hoping for the best outcome posssible. Take care.
Posted 5/23/2004 3:09 AM (GMT 0)
Hi;
I was so elated to see this kind of post! I am new as of 20 minutes ago, when I briefly looked over the site and signed up.
I am 16, and suffering from the same symptoms. Doctors across the state have been stumped by my flawless heart and head scans, as they searched for problems/diseases/illnesses; psychological, infectious, cancerous or otherwise.
The symptoms tend to become more frequent from very tight neck muscles; from stress, sleeping improperly, or simply because of TMJ, which I was diagnosed with at 12 years old. The daily headaches, severe migraines, blackouts, chest pain/breathing difficulty, etc began around the same time. I would suggest rest, Ibuprofen, and a big hug from me! :) Unfortunately, the symptoms don't completely go away, but from 4 years of the handicap, stress seems to be a small factor.

That's the best help I can offer, but I do wish to hear more from everyone about this topic! It absolutely wonderful to relate to others about this rare and baffling condition. Thank you very much for speaking out.
I wish the best of luck, --kate

Post Edited (Kate Pixie) : 5/23/2004 3:10:54 AM GMT

Posted 5/24/2004 8:50 AM (GMT 0)
I can only suggest that if the meds are not working then there is an answer to relief them syptoms and that would be the cap which I purchased after the meds didn.t work for me,try migracap you won,t be in need of your meds again.

good luck estelle.
Posted 7/20/2004 4:33 AM (GMT 0)

ok i have a few questions, i am 17 and dont suffer from migraine headaches or many headaches at all for that matter. i can only remember a few times having them. but i do have random blackouts, usually after i stand up. its weird because my whole body will just freeze i wont be able to see anything and if i move i will collapse. i tried moving the other day and fell on my printer confused   it was very painful.......

the blackouts clear up in about 10-15 seconds but im just curious as to y this culd be happening? lack of blood flow to the brain?

(i wasnt sure where to post this so im sorry if its off topic :-p)

Posted 3/3/2005 10:43 PM (GMT 0)
I am seventeen years old and I have been having the same problems with blackouts for a long time, but I don't know anything about how it happens or even why. All I know is, for me, it's painful at times, and i have a hard time breathing when it happens. I'd apprieciate it if someone contacts me about what they experience when the black outs occur. thanks in advance.
Posted 3/5/2005 5:00 PM (GMT 0)
Sounds like seizure activity to me. I have seizures that mimick migraines. Just a thought...
Posted 4/11/2005 11:51 PM (GMT 0)
Jernik
migranosis means i have a full scale migraine for more then 72hours. The P.O.T.S which stands for pastoral orthostatic tachacartia syndrome. Basically what that means is when i stand up my blood pressure drops and my pulse goes way up causing me to blackout and have the same symptoms as your sister in law. I'm 17 and i have been dealing with headaches and surgeries since age 8. To be diagnosed with P.O.T.S you need to have a tilt test done. You can control this with medicine and fluids. I drink two gallons of water a day and am on medicine. I can't help you with the headache side, i am currently in Michigan at the Michigan head-pain and neurological institute, this hospital has the best doctors and a whole program devoted just to head-pain, weather it be migraine's, trauma from after an accident, whatever. I believe that if her headaches don't go away this place would be a very good place to figure out what's up. I hope this helps you even if its a little bit. God bless you and your family...i know this is tough.

Post Edited By Moderator (Admin) : 8/7/2010 10:45:13 PM (GMT-6)

Posted 4/27/2005 12:10 AM (GMT 0)
Alright, I've decided to go into a little more detail with my blackouts, since I haven't found much information on them.  I have been getting blackouts for the past 7 years now.  I don't pass out or anything like that, it's just my vision gets messed up and it feels like I'm looking through the opposite end of a telescope.  Sometimes my vision goes completely but that is only when they are really bad.  I really have know clue what causes them.  They are painful, most of the time.  I sometimes get them without the pain.  Those are my lucky ones, but my heart races and I have a harder time breathing.  My father told me it was from getting up too quickly but I have a hard time believing that.  It's not that I don't believe people can't get it that way.  I know they can because of the sudden drop in blood pressure, but I also get them while I'm walking, and even when I stretch.  If anyone has any information I'd really apprieciate it.  Right now I'm kind of stuck when it come to going to the doctor so any information is ok.  Thanks for taking the time to read this.
Posted 4/28/2005 10:58 AM (GMT 0)

estelle said...
I can only suggest that if the meds are not working then there is an answer to relief them syptoms and that would be the cap which I purchased after the meds didn.t work for me,try migracap you won,t be in need of your meds again.

good luck estelle.

Hi Estelle

I've too got the migracap.  It works really well for me when the dreaded 'm' comes along.  Its just so practical.  Got to get another one.  I've not found anything else since that I would consider and I feel healthier not having to take meds. 

A friend of mine just got one and she got free postage so now is the time to buy!

Have you found a reduction in the number of 'm' attacks you get?  Do you find it better from the fridge or freezer?  Not tried mine in the freezer yet. 

bp49

Posted 10/13/2010 10:34 PM (GMT 0)

First, moderators, I recognize that this is a very old post and I know that many forums have rules against 'bumping' or even replying to old posts. I did not see this in any of the forum rules but if I missed it somewhere please delete this reply and accept my appologies for my oversight.

The stories I am reading in this post about migraines - with and without pain, black outs, memory loss, vision changes and mentions of seizure activity, sound like they could be describing my situation, whichseems to have come to a head back in August. My last neurologist (of three seen thus far) suggested a diagnosis of "basilar type migraines" and has placed me on daily Nortryptaline as an attempt to prevent what has been going on. My primary care physician is far from 100% sold on this diagnosis and while I want to trust the physicians I am also maintaining an open mind and am continuing to research and to learn whatever I can so that I can be an active member of my care planning team. I live in rural Canada so access to specialists is limited, but I was fortunate to find a wonderful ENT and a neurologist who seems reasonable despite the distance that I have to travel in order to be able to see them.  I would be happy to go into more details of the symptoms that I have experienced, the doctors I have seen, etc. if anyone would like to know, but to save on length of this post for now, I am simply hoping to reach out to anyone on the forum, especially those who replied to this post when it first was posted (if anyone is still around or receiving updates from the site). I am looking for any information that you would be willing to share. What tests were performed, what diagnosis you received (if any) and also what treatment options (medications, homeopathics, naturopathics, traditional, non-traditional, etc.) may have been successful. I know the forum has rules about promoting specific treatments, I would just appreciate any additional insight that anyone can provide.  

Thanks for reading, and hopefully replying.

Lex.

Posted 12/19/2010 2:11 PM (GMT 0)
Hi, my daughter who is 18 has been diagnosed with Basilar Migraine - she has periods of blackouts lasting for about an hour and then about half an hour regaining full consciousness and she is generally paralysed down one side whilst regaining consciousness. she then goes into a migraine within 12 hours of these blackouts. There is absolutely no warning of the blackout, just literally keels over. She has seen 2 neurologists who both said Basilar Migraine and have put her on epilepsy medication. This has worked for last 10 months but had another blackout on Friday that was very severe, was hospitalised for possible concussion as cut her head. All her obs were normal by time paramedics arrived, typical! She has had MRI, CT and EEG and ECG's and all ruled as normal. It is very frustrating for us and I am really not convinced she has Basilar Migraine.
Posted 12/19/2010 4:10 PM (GMT 0)
Hi Jen.

I am sorry to hear that your daughter is having problems again. Unfortunately I don't have much to offer you as I personally am no further ahead than I was when I made that last post, just wanted to reply to let you know that you and your daughter are not alone in this. There is some information on basilar migraine online but it take some serious searching to find anything that I have found to be useful at all.

Your daughters story sounds a lot like mine, though rather than lasting an hour my black outs, at least those that have been witnessed, are only a few minutes in duration, but I will have several consecutively over a period on one to four hours, and then the migraine will set in within hours of the last one. And my EEGs, MRIs, CT and ECGs are all normal as well. Since your daughters last black out have you been able to speak with either of her neurologists? Have they, or any of the other doctors given you any other theories or are they all sold on the basilar migraine idea? Do you know the name of the epilepsy medication that they gave her? Just trying to gather what information I can for myself, and so that I might be able to direct you to some of the relevant readings that I found.

It is not always easy but don't give up. Somewhere in all of this there has to be an answer. Good luck to you and your daughter.

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