Guest guest Posted March 21, 2004 Report Share Posted March 21, 2004 I have had many "weird" head symptoms. Nausea, dizziness, balance disturbances, flushed and ill feeling, difficulty with my eyes, stabbing pains, numbness and prickling feelings, and times where I felt so aweful I could do nothing BUT lay down and sleep. At times I have just felt so horrible in my head and "strange" that I would have done about anything to get it to stop. Sleep helps, at least until you wake up again. LOL I have these symptoms in spurts and haven't had them for a while. I am able to pick up on cues (the numb/tingling face/head/arm) that tell me to slow down and rest more to prevent becoming too bad (most of the time). The times I couldn't stop the crash haven't been fun! I had these problems all before Asenath's diagnosis so never had any meds so I can't help with treatment, but wanted to let you know I have been there and understand where she is coming from. Sorry I can't help much. Darla: mommy to Asenath, Zipporrah, and the gang head feel sick I'm sorry to be such a non contributing member but come to you tonight with a question. My daughter who is 16 and is assumed to have mito (based on symptoms + her brothers have a confirmed dx) explained something worrisome to me tonight. She says her head feels sick more and more...not exactly a headache but "weird" and that when it happens she gets extremely nauseated and feels she needs to lay down and go to sleep right there and then. It has been happening more and more in soccer practice as well as in school, church and just now while she was on IM with her girlfriends. She describes it as feeling feverish (but no temp) and like she has the flu. she struggled to explain it to me but it seems profound whatever it is. It reminded me a little of my 6 yr old who says "i feel like i am going to fall over" and then gets flushed and shakes as if cold, drops down (but it is a controlled drop) and falls asleep. For lack of a better word the neuro calls these "autonomic attacks/seizures" and zonisamide (a seizure med) has been remarkably helpful - however he is on 15 times the adult dose and barely maintains a level of it. I wondered if it was that?????? Does anyone have a clue ? Ever felt what she is trying so hard to explain? She never complains about anything and hates the fact she is ill and needs medicine at all so I know this is bad for her to even say anything to me. I will make an appt with the neuro but just curious if this is ringing any bells to anyone. Annewww.caringbridge.org/wi/zachsamPlease contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Hi Anne, don't ever be afraid to ask any one of us a question. I have read your many answers you have given all of us, and you continue to amaze me with your knowledge. Did you ever consider them to be SLE, these have started happening to me last summer very much like your daughter has described, they come and go sometimes I'll be fine for 2 months then wam, I'll get hit, throw up, head ache, dizzy, memory messed up, vision problems, speech gets slurred and get very tired. They have lasted for only a few hours to as long as 2 or 3 day's but then I get better and back to normal,,,, well as normal as I can get. lol lol Taking her to see your Neuro is a good thing, I hope all goes well, you sure have your hand's full, take care, your a terrific person. Patty Kraynik Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2004 Report Share Posted March 22, 2004 Hi Anne, I'm sorry to read that your daughter is experiencing this. Someone else suggested migraines and I agree that it does sound like a migraine. They can come in so many ways. This is how they affected me and they began to be their worst when I was in high school and under the pressures there. I'm sure she's on the B2 per the mito coctail but it may be time to add a seizure med that controls migraines. I'm glad you're making an appointment for her. That's such a tough age to be sick. Please let us know how you make out with this. BTW..For all you've contributed in the past - to see this apology was amazing. Anne - let the group be here for you and never feel sorry for using your valuable time to take care of your children. You are a very special person who is always giving and that has not gone unrecognized. Hugs! Alice > I'm sorry to be such a non contributing member but come to you tonight with a question. > My daughter who is 16 and is assumed to have mito (based on symptoms + her brothers have a confirmed dx) explained something worrisome to me tonight. She says her head feels sick more and more...not exactly a headache but " weird " and that when it happens she gets extremely nauseated and feels she needs to lay down and go to sleep right there and then. It has been happening more and more in soccer practice as well as in school, church and just now while she was on IM with her girlfriends. She describes it as feeling feverish (but no temp) and like she has the flu. she struggled to explain it to me but it seems profound whatever it is.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 The symptoms you are describing, Darla, sound very similar to mine which have been diagnosed as CFS. While many of these symptoms are still around some of the weird head things (aggitated/anxious/brain fog/dizziness) and even some of the problems I have with eating (everything, water included sits on my stomache like a rock) have been helped considerably by an anti-depressant called effexor. Have you ever tried anti-depressants? I'm not clinically depressed, nor have I ever been (just mild, reasonable, situational depression from time to time.) so I don't know why it works. But it's commonly used in CFS which has been linked to Mito. > I have had many " weird " head symptoms. Nausea, dizziness, balance disturbances, flushed and ill feeling, difficulty with my eyes, stabbing pains, numbness and prickling feelings, and times where I felt so aweful I could do nothing BUT lay down and sleep. At times I have just felt so horrible in my head and " strange " that I would have done about anything to get it to stop. Sleep helps, at least until you wake up again. LOL I have these symptoms in spurts and haven't had them for a while. I am able to pick up on cues (the numb/tingling face/head/arm) that tell me to slow down and rest more to prevent becoming too bad (most of the time). The times I couldn't stop the crash haven't been fun! I had these problems all before Asenath's diagnosis so never had any meds so I can't help with treatment, but wanted to let you know I have been there and understand where she is coming from. Sorry I can't help much. > > Darla: mommy to Asenath, Zipporrah, and the gang > > head feel sick > > I'm sorry to be such a non contributing member but come to you tonight with a question. > > My daughter who is 16 and is assumed to have mito (based on symptoms + her brothers have a confirmed dx) explained something worrisome to me tonight. She says her head feels sick more and more...not exactly a headache but " weird " and that when it happens she gets extremely nauseated and feels she needs to lay down and go to sleep right there and then. It has been happening more and more in soccer practice as well as in school, church and just now while she was on IM with her girlfriends. She describes it as feeling feverish (but no temp) and like she has the flu. she struggled to explain it to me but it seems profound whatever it is. > > It reminded me a little of my 6 yr old who says " i feel like i am going to fall over " and then gets flushed and shakes as if cold, drops down (but it is a controlled drop) and falls asleep. For lack of a better word the neuro calls these " autonomic attacks/seizures " and zonisamide (a seizure med) has been remarkably helpful - however he is on 15 times the adult dose and barely maintains a level of it. I wondered if it was that?????? > > > Does anyone have a clue ? Ever felt what she is trying so hard to explain? She never complains about anything and hates the fact she is ill and needs medicine at all so I know this is bad for her to even say anything to me. I will make an appt with the neuro but just curious if this is ringing any bells to anyone. > > > Anne > www.caringbridge.org/wi/zachsam > > > Please contact mito-owner with any problems or questions. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2004 Report Share Posted March 23, 2004 No, I haven't tried any meds actually. I have been offered anti-depressants to help with the dizziness and etc. but have refused them (I was nursing at the time). I am one of those people who prefer to not take meds if possible though. I have also had brain fog, startle reflex, recall problems, speech difficulties, eye problems, muscle pain and weakness, low muscle tone, migraines, dizziness, balance problems, etc. About everything MS people experience. There are quite a few of us "moms" that have Mito and there is even two groups for older people with Mito. Have you been diagnosed with Mito yet? Dr. Whiteman at the Mayo Clinic (Rochester, MINN) believes I do and all the blood work points in that direction. To be honest, I am so focused on my two little ones' problems that I mostly ignore my own, but make sure to get plenty of rest so I don't crash. I have become pretty good at avoiding crashes by watching the symptoms that occur just before the crash. Of course, there have been times where plenty of sleep did not stop the crash... Darla: mommy to Asenath (4) Assumed Mito, brain vasculitis, strokes, bi-hemi (DAFOS), g-tube, disautonomia issues, seizures, migraines, etc. Zipporrah (5 months) Assumed Mito, lactic acid issues, stroke episodes, feeding problems, bi-hemi issues, apnea/breathing issues... plus 7 other kiddos head feel sick> > I'm sorry to be such a non contributing member but come to you tonight with a question.> > My daughter who is 16 and is assumed to have mito (based on symptoms + her brothers have a confirmed dx) explained something worrisome to me tonight. She says her head feels sick more and more...not exactly a headache but "weird" and that when it happens she gets extremely nauseated and feels she needs to lay down and go to sleep right there and then. It has been happening more and more in soccer practice as well as in school, church and just now while she was on IM with her girlfriends. She describes it as feeling feverish (but no temp) and like she has the flu. she struggled to explain it to me but it seems profound whatever it is.> > It reminded me a little of my 6 yr old who says "i feel like i am going to fall over" and then gets flushed and shakes as if cold, drops down (but it is a controlled drop) and falls asleep. For lack of a better word the neuro calls these "autonomic attacks/seizures" and zonisamide (a seizure med) has been remarkably helpful - however he is on 15 times the adult dose and barely maintains a level of it. I wondered if it was that??????> > > Does anyone have a clue ? Ever felt what she is trying so hard to explain? She never complains about anything and hates the fact she is ill and needs medicine at all so I know this is bad for her to even say anything to me. I will make an appt with the neuro but just curious if this is ringing any bells to anyone. > > > Anne> www.caringbridge.org/wi/zachsam> > > Please contact mito-owner with any problems or questions. > > > > > Quote Link to comment Share on other sites More sharing options...
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