My Friend Had Her Second Seizure

[JennyJenny]

I just got an e-mail from my friend that last night she had her second seizure and the last one she had was May? of I believe 2012 when she went to fly from MS to the Virgin Islands. I believe the air pressure cabin changes and layovers got to her and she has Fibromyalgia and I know the feeling of thinking you are going to lose it on a plane because something goes wrong with the way your brain feels and my flight June of 2011 I knew would be my last. I had just starting reading that Fibro patients were having seizures although infrequent and doctors did not know why because the usual medical reasons for seizures do not fit and are not detected with x-rays, MRI's, etc.

She has been feeling better over the last 6 months or so and getting out a few times a month to her congregation and she overdid herself and she paid for it with a seizure and is now in the hospital. I was pretty sure she was overdoing it but you really can't navigate someone's health and spiritual endeavors for them.

I know tornadoes are hitting other states and possibly the air pressure in her area is out of control even though she is not getting tornadoes. It could be factoring in along with just life and Fibro stresses. The last time she had a seizure she was flying and between flights and flying has air pressure cabin changes that does affect us. I know if you mention air pressure to a doctor he/she might look at you as if you have a 3rd eye but I do think it factors in and this past week with air pressure changes all over the map and some rain my brain has been burning and hurting like anything.

So, my question is... Have others in the forum experienced seizures or anyone else you know with Fibro experienced them? I am scared to death I will if I am not careful.

 

[Cort]

I just got an e-mail from my friend that last night she had her second seizure and the last one she had was May? of I believe 2012 when she went to fly from MS to the Virgin Islands. I believe the air pressure cabin changes and layovers got to her and she has Fibromyalgia and I know the feeling of thinking you are going to lose it on a plane because something goes wrong with the way your brain feels and my flight June of 2011 I knew would be my last. I had just starting reading that Fibro patients were having seizures although infrequent and doctors did not know why because the usual medical reasons for seizures do not fit and are not detected with x-rays, MRI's, etc.

She has been feeling better over the last 6 months or so and getting out a few times a month to her congregation and she overdid herself and she paid for it with a seizure and is now in the hospital. I was pretty sure she was overdoing it but you really can't navigate someone's health and spiritual endeavors for them.

I know tornadoes are hitting other states and possibly the air pressure in her area is out of control even though she is not getting tornadoes. It could be factoring in along with just life and Fibro stresses. The last time she had a seizure she was flying and between flights and flying has air pressure cabin changes that does affect us. I know if you mention air pressure to a doctor he/she might look at you as if you have a 3rd eye but I do think it factors in and this past week with air pressure changes all over the map and some rain my brain has been burning and hurting like anything.

So, my question is... Have others in the forum experienced seizures or anyone else you know with Fibro experienced them? I am scared to death I will if I am not careful.

I haven't. I think they do happen - Andrea Whittemore had a horrible time with seizures - but has gotten over that. I think they're pretty rare though. Dr. Cheney said he thought ME/CFS patients tended towards seizure..

Dan Moricol had myoclonus seizures - his arms and legs would go flying and sometimes half his body - but he's basically well now; he used a very careful exercise program, yoga and some dietary stuff to get better.

 

[Merida]

JennyJenny , I had 2 seizures after the neck/pelvis injury that started the CFS/ FM. No one could explain this at that time- I was in an HMO that just passed me along and did nothing. Seven years later I finally had a CINE MRI flow study with a neurosurgeon experienced in this area. I had a 3 hour appt. - wonderful doctor. He told me I had a very abnormal flow of spinal fluid in the lower brain and neck, and probably had increased pressure in my brain. ( I did not have a spinal tap to measure pressure.)

We make about 600 -700 ml.( 3 cups) of spinal fluid each day which must circulate down through the brain, through the hole in the skull base into upper neck, through the spinal area to the sacrum. Any blockage along the way ( especially at top end) or problem with reabsorption ( in brain) can cause excess pressure and all kinds of problems.

Yes, I have had a lot of trouble on airplanes. They are pressurized to about 6,000 feet. I have more trouble in the airbuses than the Boeing jets. After much inquiry, I learned that they have totally different pressurizing systems. Also, more trouble when there are stopovers - up and down twice. I can tell when they close the plane doors.

This seizure issue is very important so I hope your friend has been thoroughly worked up with MRI and other studies. Neurologists were not helpful for me. It was a neurosurgeon who understood the problem - one who is very knowledgeable about Chiai malformations. I do not technically have a Chiari 1, but have all the symptoms.

 

[Merida]

Having said all of that, viruses can also cause seizures, including West Nile virus. Just hope your friend can see some good specialists.

 

[Cort]

Ha! That reminds me of this blog

• http://www.cortjohnson.org/blog/201...rebral-spinal-fluid-chronic-fatigue-syndrome/

Your lumbar pressure is high" I remember Dr. Baraniuk commenting as a doctor started removing my cerebral spinal fluid during a spinal tap for a study. "We don't know what it means - it might not mean anything - but I see it a lot in ME/CFS".

Headache is a common symptom of IIH
After I was wheeled to another room I congratulated myself on having not only survived my first spinal tap but on feeling so well afterwards. I was relaxed and my mind felt clear.

In fact, I couldn't remember the last time I'd felt this calm. I should have these lumbar punctures more often, I thought.

...................................................

Twenty people with ME/CFS (and headaches0 were given lumbar punctures. Other than their headaches they had no signs (such as papilloedema or visual disturbances) of IIH. They simply had significant headaches and were severely fatigued. The spinal taps revealed that twenty percent meet the international criteria for idiopathic intracranial hypertension (IIH - CSF pressure >20cm H20). They were reclassifed as IIH patients and treated.

Most of the ME/CFS patients in the study felt better after their spinal fluid pressure was reduced – but they do meet the other criteria for IIH. Removal of the cerebral spinal fluid during the spinal tap – which reduced the cerebral spinal pressure – resulted in symptom improvement in no less than 85% of the patients (17/20) in the study. Only five of them had CSF pressures above 20 and most had CSF pressures in the ‘normal’ range.

None had the major clinical signs (papilloedema, visual disturbances) doctors look for to suspect IIH, but when their spinal fluid pressure was reduced they reacted just like IIH patients do – they felt better. The improvement generally consisted of reduced headaches, heightened alertness and reduced fatigue that lasted anywhere from a couple of minutes to several weeks. (It lasted for several hours for me). These patients would likely never be assessed for IIH because they don’t fit the typical profile.

Read more: Pressure Building? Study Suggests Cerebral Spinal Fluid Pressure May Be Causing Problems in Chronic Fatigue Syndrome http://www.cortjohnson.org/blog/201...rebral-spinal-fluid-chronic-fatigue-syndrome/

 

[Merida]

Wow! Cort you are amazing!!! Please check out , The Downside of Upright Posture by Michael Flanagan. It is the only book of its kind, I think. A little mind-blowing- especially the implications in the last chapter. And, Dr. Flanagan takes questions in his blog.

Oh, my, this can't take 20 years. Thank you so much. I am so grateful for all you have done.

 

[JennyJenny]

Thanks for responses!

 

[Merida]

Okay, read the intracranial pressure article, comments/ survey. GREAT!!!!! Yes, I can get worse lying down,too. The great tethered cord neurosurgeon ( I just don't feel comfortable naming him due to his concerns. You would never believe what happened after I mentioned all of this to the NFRA about 2003. OMG) told me that when we lie down, the spinal curves changes, and we can put more tension right on the spinal cord.

But also, I can feel the pressure on my occiput and upper neck. I can feel my ( unstable) sacrum pushing more toward my belly button. I am still ( many years) trying to get this situation corrected !!! Now, somehow ended up with osteopath who is really some energy worker/ qigong master. We'll see.

 

[JennyJenny]

Having said all of that, viruses can also cause seizures, including West Nile virus. Just hope your friend can see some good specialists.

I hope she has good specialists too.

My Neurologist isn't a great help and I think he is part of what we call "The Old Guard" in that they are not budging in accepting Fibro and ME/CFS as being Neurological but I think those who are going to be entering the field and have entered the practice within last 5-10 years are going to be more accepting.

My Neurologist isn't moved by the findings of the brain lighting up when blood pressure cuffs were applied and we light up disproportionately but he was kind to me and did not brush me off. He said he would report all we discussed to my Rheumatologist.

He does not like the new name SEID and will only prove to make things less clear (SEID was reported on in his Neurological journal he gets but said most of his colleagues will take 10 years to even know about it even though it was written about) and we did discuss Cytokines but he said that the research world and clinical world are very different and when I said I wasn't terribly hopeful that we would even have a test in 5 years he actually seemed more hopeful than I was so I just report symptoms.

I think he may believe more that ME/CFS is Neurological than Fibro.

 

[JennyJenny]

Okay, read the intracranial pressure article, comments/ survey. GREAT!!!!! Yes, I can get worse lying down,too. The great tethered cord neurosurgeon ( I just don't feel comfortable naming him due to his concerns. You would never believe what happened after I mentioned all of this to the NFRA about 2003. OMG) told me that when we lie down, the spinal curves changes, and we can put more tension right on the spinal cord.

But also, I can feel the pressure on my occiput and upper neck. I can feel my ( unstable) sacrum pushing more toward my belly button. I am still ( many years) trying to get this situation corrected !!! Now, somehow ended up with osteopath who is really some energy worker/ qigong master. We'll see.

YES, I don't feel better lying down either. It can make things worse and only when I am collapsing do I lie down during the day.

 

[Merida]

Jenny, I appreciate your information and sharing of experience. I just have not had good experiences with neurologists, even though they are kind and want to help. I just got dx ( finally) with dysautonomia by a new neurosurgeon. He referred me to a new neurologist ( hadn't seen one in years) who is an expert.

I am thinking - oh boy I will finally get a tilt table and maybe an offer of some different meds. Well, I came away with a prescription for Cymbalta. Okay, hadn't tried that recently, try again. One pill, completely out of it all afternoon, headache, nausea, etc etc. So , back to Me doing the research. I am tired of this. I found that there is a whole group of dysautonomia patients that have a faulty NET gene - norepinephrine transporter gene. They have trouble breaking down norepinephrine.

Cytokines - yes, my tumor necrosis factor alpha has been elevated - but on and off . Not consistent - like everything else. I was interested in your doc's comment on the new name SEIDS. Geez. That is only ONE symptom.

I am pretty much giving up on regular medicine, and sticking with the 'woowoo ' stuff . Maybe a week at Pine Ridge reservation with a Lakota medicine man???

My best to you, Jenny. Please keep sharing. I learn so much from all of these individual experiences.

 

[Issie]

Jenny, I appreciate your information and sharing of experience. I just have not had good experiences with neurologists, even though they are kind and want to help. I just got dx ( finally) with dysautonomia by a new neurosurgeon. He referred me to a new neurologist ( hadn't seen one in years) who is an expert.

I am thinking - oh boy I will finally get a tilt table and maybe an offer of some different meds. Well, I came away with a prescription for Cymbalta. Okay, hadn't tried that recently, try again. One pill, completely out of it all afternoon, headache, nausea, etc etc. So , back to Me doing the research. I am tired of this. I found that there is a whole group of dysautonomia patients that have a faulty NET gene - norepinephrine transporter gene. They have trouble breaking down norepinephrine.

Cytokines - yes, my tumor necrosis factor alpha has been elevated - but on and off . Not consistent - like everything else. I was interested in your doc's comment on the new name SEIDS. Geez. That is only ONE symptom.

I am pretty much giving up on regular medicine, and sticking with the 'woowoo ' stuff . Maybe a week at Pine Ridge reservation with a Lakota medicine man???

My best to you, Jenny. Please keep sharing. I learn so much from all of these individual experiences.

Merida,
Sounds like you may have POTS or at least they think you have some sort of dysautonomia. There is a lot of info from way back on the DINET site. If you look me up on there you can read my content. It's easy to Google it now. You don't have to be a member to read some of it - I don't think. We have such similar issues. I live in Phoenix and have some of the best docs out here. One who is considered one of the best Dysautonomia docs around for POTS is Dr. Brent Goodman. He is at Mayo. He is also a neurologist. My other doc is the one who is addressing things from a diet and autoimmune angle - Dr. Stephen Fry. I wrote a thread on him and gave a lot of reference info that can be looked up on this forum. Don't totally give up on Docs. I found some really good ones. But, mostly addressing things myself and learning a whole lot along the way. Fortunate to have had a good team at Mayo (saw about 16 different doctors there alone). And finding Dr. Fry for close to the last piece of my puzzle. Want to look into the structural issues a little more.

Issie

 

[Issie]

Jennyjenny, you may find the thread A piece of gum - glutamate/aspartate interesting in connection to seizures.

Issie

 

[JennyJenny]

Jennyjenny, you may find the thread A piece of gum - glutamate/aspartate interesting in connection to seizures.

Issie

Thanks. I will read that.

 

[Merida]

Merida,
Sounds like you may have POTS or at least they think you have some sort of dysautonomia. There is a lot of info from way back on the DINET site. If you look me up on there you can read my content. It's easy to Google it now. You don't have to be a member to read some of it - I don't think. We have such similar issues. I live in Phoenix and have some of the best docs out here. One who is considered one of the best Dysautonomia docs around for POTS is Dr. Brent Goodman. He is at Mayo. He is also a neurologist. My other doc is the one who is addressing things from a diet and autoimmune angle - Dr. Stephen Fry. I wrote a thread on him and gave a lot of reference info that can be looked up on this forum. Don't totally give up on Docs. I found some really good ones. But, mostly addressing things myself and learning a whole lot along the way. Fortunate to have had a good team at Mayo (saw about 16 different doctors there alone). And finding Dr. Fry for close to the last piece of my puzzle. Want to look into the structural issues a little more.

Issie

Issie, sorry to be so unresponsive - completely unable to go on forum - flattened on couch. This is very helpful information. Thank you !!!!

I am reading a new book by Professor Dr. Valentyn Serdyuk, orthopedic surgeon, prof. at Odessa University. A stellar researcher/doc for Scoliosis. ( He has 244 journal articles, patents, books, etc etc). He talks about vertebral artery syndrome.

The vertebral arteries go through foramina or holes in the lateral sections of the neck vertebrae - a type of boney canal leading to the brain. He has found multiple variations in the structure of this foramina. Some are small, and can place pressure on the vertebral arteries, especially when there is some rotation/tilting of the cervical vertebrae as a result of scoliosis or injured ligaments !!

INTERESTING that the vertebral arteries are wrapped in sympathetic nerves that originate from the lower node of the cervical sympathetic ganglion. He discusses vertebral artery syndrome - when the vertebral arteries are impinged by boney structural issues.

I have never had any kind of evaluation of the vertebral arteries - even though it was a twisting and pulling of my neck ( and pelvis) by a chiropractor that started the whole mess.
Not hard to imagine autonomic chaos if these sympathetic nerves are right there also being impinged ???!!!

Have you ever had these vertebral arteries evaluated ???