Kristen's Disaster - Please Help!

[Steph06]

Hello,

I am so sorry to hear what you and your wife have been through. When I read your post I thought I was reading about myself. Along with having POTS, I was recently diagnosed with Dystonia. I was also having seizure like movements and the doctors could not find anything wrong with me. Finally I was told I had a form of Dystonia. Its a neurological movement disorder. My brain sends signals to parts of my body that I can not control. It is very rare to have both chronic illnesses but it can happen. Dr. Grubb in OH said he only has about 5 patients including me that have both POTS and Dystonia. When you mentioned seizure like movements I thought this is something you and your wife may want to talk to the doctors about. If you have any questions please feel free to send me a message any time. I am praying for you and Kristin to stay strong and don't give up.

Take Care,

Stephanie

[jjb]

Hi Kristens husband.

We have been going dealing with the more unusual seizure types, dysautonomia and possible parasomnia such as cataplexy.

I can understand your frusteration.

My daughter sees an epilepsy specialist at MGH and I see a neuro in Worcester.

My neuro suggested me having aut testing by Peter Novak in Worcester. Novak also has an interest in movement disorders.

I did and so did my daughter.

He has other cases where pts have similar issues and it is sometimes difficult to know what is what.

I have had most of what you describe as Kristens symptoms when my dysautonomia was at it's worse.

I understand Kristen has had EEGs, but has she had a prolonged eeg? Like two days to a week of continuous monitoring?

You mentioned she had abnormalities, but not at the times of the episode, I would wonder a couple of things.

Either the episode being part of dysautonomia and it triggering epileptic abnormalitites or the other way around.

Both can happen and both have happened to me and still happens to my daughter.

Another thing to consider is that some epileptic/epileptiform activity can be too deep for the typical electrodes to pick up.

Anyway, I hope you can figure things out soon.

Hello everyone,

I am new to this site and would like to share with everyone my wife's story. We could really use help / advise from anyone who is in a similar situation or has similar symptoms...

A little over two years ago (August of 2007) my wife Kristen (who was 24 at the time) began experiencing a whole series of thyroid-like symptoms. She is a special education teacher who absolutely LOVES her job and first began to notice difficulty concentrating, focusing and planning her lessons. This soon progressed to unexplained weight loss, terrible night sweats, rapid heart beat, and hair loss. She was seen three times by doctors at a walk in clinic and each time she was tested for a thyroid condition and told that she was within the normal range. After the third visit, she was told that her symptoms were due to stress and anxiety and she was prescribed Zoloft for depression (which she never took). By about late October or early November, her symptoms more or less went away on their own and she felt back to her normal self. Kristen remained healthy until the following July when her thyroid-like symptoms began to return. Again, the first signs of trouble were difficulty with concentration and with focusing, soon followed by night sweats, hair loss, rapid heart beat and some minor difficulties with language (aka looking at a picture and calling the object by the wrong name). Kristen was again tested for a thyroid condition and again she was told that everything was fine. This is when things started to get really weird...

Beginning in late August, Kristen began "having episodes" in which it seemed as if she would pass out. The very first time she had been at the beach all day and after eating dinner she got really dizzy. She told me that she felt like she was going to pass out and as I walked her towards a chair, she went out in my arms. I brought her to the chair and within about 2 minutes she had come around. As this was the first time this had ever happened and we had been out in the sun all day, we chalked it up to dehydration and tried not to get too concerned. However, following this episode, Kristen began to become really tired and lethargic. Within 3 days, she had passed out again and we went to the ER. She was not admitted and was told to stay hydrated and take it slow for a couple of days before returning to work. Over the next few days Kristen took it very easy at home but continued to pass out. However, things began to change. First, she began to loose her warning signs (no longer always felt dizzy....although sometimes she would) and also no longer needed to be standing up. Sometimes she would be sitting or lying down (having not changed position for a long time) and would simply go out. During all of these initial instances, she would generally wake up on her own within a couple of minutes. She also began to develop a really terrible headache that would change in intensity but would not go away. After a few days of this, we brought her back to the hospital and she was admitted.

Kristen underwent all the usual tests and they told her that everything was normal. She had EEGs, EKGs, a series of MRIs (with and without contrast), an abundance of blood work to check for infections, anemia, etc. and everything was fine. During this time, her headaches got worse and she continued to "have episodes" without any warning. She eventually had a tilt table test and was told that she had vasovagal syncopee. She was put on pindolol (a beta blocker....not sure if I spelt that correctly), was told to stay very hydrated and was sent home, being told that she could return to work in 3 days. Once home, she continued to get worse....having more and more "episodes" in any position and without any warning signs what-so-ever despite the pindolol and despite staying very VERY hydrated. Her headache also continued to get worse and her night sweats became unbelievably bad (she started sleeping in a sleeping bag on top of the bed so that we didn't need to wash the soaked sheets every day). After 3 or 4 days we brought her back to the hospital and she was again admitted. While in the hospital she continued to have episodes without any warning, she also developed some twitches (mostly in her right leg...both while awake, while asleep, and while having episodes) and her headache continued to get worse....to the point that they ordered another MRI (which showed nothing expect a pineal cyst which they felt was unrelated and was not a big deal...but was worth monitoring and put her on every imaginable pain med from oxycodon, to morphine, to dylauted, all without success. During this time, her episodes continued and she began to twitch more and more while out, her eyes began to open and close, and she would occasionally make little squeaking noises. It also began to become more and more difficult to arouse (they began to do sternal rubs, etc.). She had another 2 EEGs (with video....because they began to suspect seizures), another series of long term EKGs (which showed a partial mitral valve prolapse), and some additional orthostatic testing and another tilt-table test. This time, she was told that she had POTS and was again sent home. They discontinued her pindolol and started her on Mitodrine (5mg x3), and Pyridostygmine (60mg x3). Once home (she was released on Oct 1) things continued to go down hill despite the meds. Some days she would have upwards of 20 episodes. She would also have the same symptoms while sleeping at night. She went to another neurologist, cardiologist, infectious disease specialist and for more testing at an outpatient autonomic center in Boston (where she had yet another tilt table test) and they confirmed the POTS diagnosis, and adjusted her dosage to 5mg x4. She continued to suffer episode until early November when things began to improve gradually and by the end of November she was nearly good as new. By mid December she was able to return to work and was virtually symptom free. For the next 7 months she went about her daily life, working, going to the gym, etc. and feeling pretty much normal. However, this past July, it started again!

First, the inability to concentrate, then the dizzyness, then the passing out....first with warning and following a change of position, followed by a quick recovery on her own. This again progressed to passing out without warning and the return of the seizure-like activity while out and while asleep at night. The headache is back with a vengence as is the hair loss and to a lesser extent, the night sweats. Also the twitching has gotten much worse (now her neck and legs) and it is happening more and more and without her knowledge. She is currently hospitalized for the third time this year (we have now gone to the Boston hospitals for the past two admissions....best in the world right?) and they are just as puzzled as everywhere else. She has had more EEGs (on one they said slightly irregular....looks really tired and on the other they said some epileptic activity but when they look at her episodes on the video, they don't match up with the unusual activity!), more EKGs, a PET scan, a spinal tap, and more MRIs which have shown that the cyst on her pineal has changed shape but has not significantly increased in size and the doctors cannot seem to agree with each other about whether or not this may be a problem. It is not impeeding the flow of her cerebral spinal fluid, but they still talk about possibly draining it (grasping at straws I think). She is also scheduled for a sleep study, but that will not be as an inpatient, but the doctors don't seem overly optimistic.

Kristen has also been on two 30 day cardiac event monitors (which always show no problems during her episodes). Also, during her second hospitalization of August 2009, she was finally diagnosed with Hashimoto's thyroiditis (an autoimmune disorder causing hypothyroidism). She has been started on Levothyroxine for that....so far without any improvement but we were told that it may take 6-8 weeks. The one piece of good news is that the mitral valve prolapse appears to be getting better. She has recently been started on an anti-seizure med (Kepra....7.5mg x2)....just in case they are seizures....no real improvement yet, and she has also been put on Fludrocortisone and had the pytidostygmine discontinued.

It is just sooooooo much to digest. It seems as though every time we go to the hospital she has developed a new problem but nothing has gotten better. She was perfectly healthy until three summers ago and now she has so many problems which they cannot find a link between, however they always all show up (and disappear) together. However, each time that they come back they seem to be worse than the time before and with new symptoms added as well. Does anyone out there have a similar story. We have tried to think of any possible exposures, etc. that could have caused these problems but we cannot come up with anything. Why the seasonal component? I know that POTS can be made worse by the heat and humidity, but all this? Kristen is not a complainer and has remained remarkable up beat through most of this. However, these past few days she has mentioned that she feels like she "is slowly dying" and I am starting to worry that they might never figure it out. I am relatively confident that her symptoms will likely disappear again, even if they do not figure things out, but now we just figure they will come back again next July / August (probably worse than this time) if we don't have any answers. Any thoughts / help / similar stories would be much MUCH appreciated.

Thanks

Kristen's concerned husband.

[smiles]

Wow! First of all I can relate to the issue of the docs not knowing what all is going on for years. That is sooooo very frustrating.

You sound like a wonderfully supportive spouse. That is so important to Kristen. My husband also has stuck with me thru everyting. Keep up the good work.

I also have had serious issues with convulsive activity during syncopal episodes. Convulsive syncope is not very common so sometimes hard to diagnose and treat. I know that from personal experience. Over the years they have tried numerous meds on me. I have finally found something that helps prevent my convulsive activity. I take GABA now. You can get it at a health food store. It is a neurotrasmitter and an amino acid. I helps calm the crazy messages that cause seizure like problems. It takes 1ooo-1500 mgs. a day. I started gradually and worked up to the 950 mgs. I take now. My convulsive activities would sometimes take IV meds at the hosp. to get them stopped. It was horrible.

I noted one other thing that you said that was similar to my situation. I have deglutition syncope (swallow syncope). My doc says there are only 30-50 people in the US that have it. I may pass out after putting a bite of food in my mouth and only chewing a few times or I may be almost done with a meal and pass out. Other times it happens with in 10 min. of eating. My swallow syncope sometimes ended in abnormal, uncontrollable sounds or babbling, rolling eyes, jerking muscles, sometimes muscle contractions... It is hard for docs sometimes to separate out different types of dysautonomic conditions when they seem so all rolled up into one. The passing out while eating very well may be swallow syncope. I have not yet heard of anyone else on this or the NDRF forum (National Dysautonomia Research Foundation) having this condition. I am the only one to my knowledge. It is very difficult to treat. I am stable now but have flare ups of it if I get an infection, hormonal changes, med changes, or other physical stressors.

As far as Mayo Clinic, I got denied to go because they didn't think they could help me. My doc made the referral several years ago before we knew what all was going on with me.

I wish you and your wife the best. Let me know if I can be of further help.

Smiles

[smiles]

Kristen's husband,

It's me again. Swallow syncope is sometimes caused by over stimulation of the vagus nerve. The vagus nerve goes around and near the heart, GI tract, and is one of the longest nerves from the brain. The process of swallowing and eating and digesting can cause this nerve to over react and cause all these bizarre symptoms. Treatment (if no pace maker is needed) is to try meds that calm the vagus nerve. I wish you the best of luck. I hope her docs can unravel all her symptoms and get each diagnosis separated. It can be a grueling process. Tell her I can relate to her. She is not the only one.

Smiles