Kristen's Disaster - Please Help!

[npilotte8825]

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.

[EarthMother]

Welcome. I hope you and Kristen each have a chance to meet people and share the journey with some folks who have walked in your shoes.

It sounds like answers are coming very slowly and that some of the pieces of the puzzle are falling into place.

Do read up on Hashi ... both what the "specialists" say and other sites like http://www.stopthethyroidmadness.com/ that can talk from a patient's prospective about what can happen with autoimmune thyroiditis. Also any book or article by Mary Shomon ... http://thyroid.about.com/ in my opinion she is the definitive source for thyroid disease. I've had Hashi since I was in my early twenties. The problem with hashi is of course that it goes BOTH WAYS ... sometimes HIGH sometimes LOW thyroid depedning on the surge of the anti-bodies and how much scar tissue has built up on the gland. It usually doesn't go hypo until closer to menapause in many cases. Which means it can be a roller coaster ride until then. One of the things some endos do is treat the Hashi with higher doses of Synthroid (or Levoxyl) in hops to have the gland stop producing on its own. In any event, finding an Endo or PCP who will treat based on how Kristen is feeling rather than just based on her blood work alone will be a boon. Keep looking, until you find someone you are comfortable with.

I wish I had "advice" on what helps, what next and where to turn ... but unfortunately this journey seems to be highly unique and often unpredictable. Best I can offer is to encourage Kristen to follow her heart, her own inner wisdom will guide her to what path to choose each step of the way. Love and support her and listen to her thoughts, feelings and frustrations. You don't need to try and "fix" anything ... though you will be tempted to try and do so and will no doubt feel helpless. Just being there to listen is often of the most value.

And of course we are always here to listen too!

Good luck on this healing journey.

~EM

[juliegee]

Hello & Welcome!

Sorry you had to find yourself here. I read Kristen's story and see what an odyssey you've been on for the past several years. I have a few thoughts. It's clear that Kristen has vasovagal syncope, neurally mediated hypotension, or neurocardiogenic syncope- all naming the same condition in which the patient's BP sometimes drops precipitously without warning. Some patients develop seizure-like activity while unconscious although they are not having true seizures.( It's happened to me once- quite frightening.) If the docs have DXed her with POTS, that means her HR raises more than 28 BPM after she's upright for 10 minutes or less.

Kristen seems to have many attacks in a cyclical pattern & I'm sure that you're trying to figure out what provokes them. Have you identified any triggers? Any helps? Does she stay really well hydrated and eat a diet high in salt? I would guess that getting to an autonomic specialist is your best bet in sorting things out. Can you share with us where you live? We have amazing members that will help you find a qualified doc in your area. Maybe her medication/lifestyle regimen just needs a little tweaking.

A warm welcome to you both. I hope you find some answers soon-

Julie

[npilotte8825]

Hi Julie,

Thanks so much for the response. Kristen and I live in western Massachusetts (approx. 2 hrs west of Boston) so after struggling through the western Mass. hospital scene we have been driving to Boston for the past two admissions. We are currently in the process of trying to get onto Dr. Grubb's waiting list in Ohio but would welcome any help from anyone who knows of some good specialists closer to home. Kristen is currently at Beth Israel Deaconess Medical Center in Boston so she has been seen by the autonomic nervous system specialists here and while they have played with her meds, etc., they fully admit that they do not believe that POTS, or neurogenic syncope explain all of her symptoms. It is just very strange to us because when the problems return each summer, her initial episodes seem to be related to POTS (she feels dizzy, knows that she is going to pass out, and then sometimes does, waking up 1 or 2 minutes later more or less on her own). However, it is as if POTS sets something else off, because soon enough the dizziness gets better, the warning goes away completely and change of position making a difference goes completely out the window. She is also sometimes out for extended periods of time, the longest being approx. 2 hours. As far as lifestyle changes go, she is currently unable to do much of anything. Whenever she is up and about, she is unbelievably tired and recently she has only been walking with assistance because she will just drop without warning while walking around (she has also gone out and fallen out of her chair without warning while chewing). I cannot believe that hydration is the issue because she has been drinking an unbelievable amount of both water and gatorade (about 4 liters of water plus 3 or 4 bottles of gatorade a day), but we'd welcome any other suggestions anyone might have.

thanks again for the help and the warm welcome!

Hello & Welcome!

Sorry you had to find yourself here. I read Kristen's story and see what an odyssey you've been on for the past several years. I have a few thoughts. It's clear that Kristen has vasovagal syncope, neurally mediated hypotension, or neurocardiogenic syncope- all naming the same condition in which the patient's BP sometimes drops precipitously without warning. Some patients develop seizure-like activity while unconscious although they are not having true seizures.( It's happened to me once- quite frightening.) If the docs have DXed her with POTS, that means her HR raises more than 28 BPM after she's upright for 10 minutes or less.

Kristen seems to have many attacks in a cyclical pattern & I'm sure that you're trying to figure out what provokes them. Have you identified any triggers? Any helps? Does she stay really well hydrated and eat a diet high in salt? I would guess that getting to an autonomic specialist is your best bet in sorting things out. Can you share with us where you live? We have amazing members that will help you find a qualified doc in your area. Maybe her medication/lifestyle regimen just needs a little tweaking.

A warm welcome to you both. I hope you find some answers soon-

Julie

[npilotte8825]

Thanks so much for the warm welcome and for the thyroid info. Kristen is checking it out right now! I tell her every day that I'll never quit if she doesn't and we all try to encourage her as much as we possibly can. She does get frustrated....mostly because she thinks she will soon loose her job (which she loves so much), but she's promised to keep fighting.

Thanks again

Welcome. I hope you and Kristen each have a chance to meet people and share the journey with some folks who have walked in your shoes.

It sounds like answers are coming very slowly and that some of the pieces of the puzzle are falling into place.

Do read up on Hashi ... both what the "specialists" say and other sites like http://www.stopthethyroidmadness.com/ that can talk from a patient's prospective about what can happen with autoimmune thyroiditis. Also any book or article by Mary Shomon ... http://thyroid.about.com/ in my opinion she is the definitive source for thyroid disease. I've had Hashi since I was in my early twenties. The problem with hashi is of course that it goes BOTH WAYS ... sometimes HIGH sometimes LOW thyroid depedning on the surge of the anti-bodies and how much scar tissue has built up on the gland. It usually doesn't go hypo until closer to menapause in many cases. Which means it can be a roller coaster ride until then. One of the things some endos do is treat the Hashi with higher doses of Synthroid (or Levoxyl) in hops to have the gland stop producing on its own. In any event, finding an Endo or PCP who will treat based on how Kristen is feeling rather than just based on her blood work alone will be a boon. Keep looking, until you find someone you are comfortable with.

I wish I had "advice" on what helps, what next and where to turn ... but unfortunately this journey seems to be highly unique and often unpredictable. Best I can offer is to encourage Kristen to follow her heart, her own inner wisdom will guide her to what path to choose each step of the way. Love and support her and listen to her thoughts, feelings and frustrations. You don't need to try and "fix" anything ... though you will be tempted to try and do so and will no doubt feel helpless. Just being there to listen is often of the most value.

And of course we are always here to listen too!

Good luck on this healing journey.

~EM

[pat57]

HI,

I have just 2 things you might ask about. One is have they checked her hormones, could they be fluctuating?

Also I would inquire whether sweating is a sympathetic or parasympathetic function and consider meds that block those receptors.

I would search Pub-med also if I was you.

www.pubmed.gov

good luck

[kayjay]

Kristen's Husband.... I also am a Special Ed Teacher and I got sick when I was 25. I am now 36. At first I had horrible night sweats, hair loss, weight loss, and other things that you describe. Anyway I went to Johns Hopkins in Baltimore.... was misdiagnosed...was sent to NIH.. over the next few years I gradually got better and we just thought that I had horrible mold allergies. I "got by" for a few years but I started to teach preschool (I have my M.Ed in special ed) b/c it was only 3 days a week.

I got really sick again about a year ago and sick turned to unable to walk up the stairs by spring. I want to encourage you to try to get your wife out to the MAYO clinic in Rochester MINN. They finally helped me and diagnosed me. They did take my insurance and I will say Mayo clinic made Hopkins look like a DUMP.... (sorry if I sound bitter) anyway MAYO will take a team approach which your wife (and many of us need). They are considered the #1 hospital in the US and it is worth the trip. (Hopkins is # 2 yet they are worlds apart). If I can offer any help you can email me. I will share any info I can with you. Please keep hope that she was better before and will be better again. When you are in a "flare" things get bleak quickly. In my opinion the most important thing to do is to get her to the right place. Mayo is considered sort of pioneers of "pots diagnosis" much of the testing used elsewhere was developed there. Once you go there they will work with you long distance (I spoke with them Friday as I live in PA). Anyway the Autonomic Neurologist I saw there told me that there is only one Dr on the east coast he could recommend but that it "would take a really long time" to get in to see him he is in New york city.- Best wishes... ask us anything (I should let you chat with my hubby... he was in your shoes not too long ago). Best wishes to you and keeping Kristen in Prayer- Kari

[Guest tearose]

Hi, and welcome,

I just sent you a PM.

Please get her to an ANS testing center and get off all meds and find out what is really going on.

I recommend Dr. Fealy at Mayo Cllinic in Rochester MN. I too was sent around and around to cardiologists, infectious disease docs, neurologists even oncologists...it wasted precious energy, resources and time. My life was given back to me once I had the complete ANS workup and the answers came pouring in!

best regards,

tearose

[kayjay]

PS I read what Kristen is drinking. If she can get her to drink V8. It has helped me a lot. The drs told me to get no more that 50% of my liquids from water (hard to do when you are thirsty) but too much water is bad for us too. - Flushes us out too much.

[dsdmom]

Welcome -

I am so very sorry for what you and your wife are going through - my heart truly breaks for you. It sounds horrible.

As someone else who has been through all the big hospitals in Boston I am sorry to say I think you may need to go to to some place like Mayo for a team approach. Yes, Boston has great hospitals and doctors - but my experience is that they do not approach things in a way that may help your wife the most since she clearly is a very complicated case and needs a team of doctors who are communicating about her case. Dr. Grubb is supposed to be great but his specialty is clearly dysautonomia/POTS - if your wife has other things going on they need to be uncovered/investigated as well.

I wish you the best of luck and hope you find some answers/relief soon.

[npilotte8825]

Hi Kari,

Thanks for the info and the support. I will look into getting Kristen into the Mayo Clinic tonight. Were you on an incredibly long waiting list? It does seem impossible when she is in one of the bad spells, but we have taken some comfort in knowing that in the past, she has recovered (at least temporarily).

Nils (Kristen's husband)

PS - I may take you up on your offer to hear your husband's story! I don't have trouble sticking by / supporting Kristen, but keeping on top of work is a challenge.

PS I read what Kristen is drinking. If she can get her to drink V8. It has helped me a lot. The drs told me to get no more that 50% of my liquids from water (hard to do when you are thirsty) but too much water is bad for us too. - Flushes us out too much.

[kayjay]

No long wait.. it seemed like it at the time. Email me and I will look up the # for the POTS clinic there. They really will check everything. I have BC/BS and they took it. It seemed like a long wait (3 months). But still go if you can. I was worried b/c I was better when I was there and I worried about the test results. Silly me, they know what they are doing to and you do not need to have any symptoms during the testing to get answers. They also don't put you though useless testing (they canceled my tilt-table test b/c they didn't need the info... Hopkins and NIH used me as a guinea pig...

(again I'm a little bitter). Really I will even help you out with hotel info. and where to eat the food situation was VERY important to my hubby, we tried to pretend we were on vacations and oddly enough we had a pretty go time considering! Really ask us anything via email and we'll give you any info we can. Kari

[kayjay]

P.S. again ...I saw Dr. Fealy (like tearose) but I would see anyone there. Autonomic Neurologist are rare. I think at Mayo they are all literally world class. Kari

[peppermint patty]

When I read your post, I thought of my own symptoms and story. This past March I was standing inside a classroom ( I am a teacher) and my head began to feel very strange. I forgot to mention the week leading up to this I had severe headaches everyday. I thought I should get something to drink at my desk and then I sat down. That was the last thing I remembered until I woke up in an ambulance. They said I had a seizure, but whean the hospital ran all their tests everything showed up fine. Since I have no previous history (and I am 49) of passing out --- home I went.

My family dr. sent me to a neurologist who did an EEG. A couple of days after the EEG, while I was sitting on the sofa, my head began to feel very strange again. I needed to lay down, but then my I felt nausea and was in a cold sweat. I thought I was having a heart attack. I went to the hospital and again they ran tests. I was at that time mis-diagnosed with epilepsy and prescribed a high dosage of Keppra (an anti-seizure medicine). The symptoms continued and became worse. Keppra exasperated all my symptoms and added severe crying. I couldn't stand and was constantly fatigued. I went to hospital after hospital looking for help. I went to one hospital and they said I did not have epilepsy, I was having panic attacks (even though I did not feel panicked). My family dr. knowing me for many years did not agree with that diagnosis. He kept testing me and then sent me to several doctors.

Finally when I went to the cardiologist and I described all my syptoms, she said I had just took a page out of a medical textbook under the diagnosis for NCS---neurocardiagenic syncope (except you usually do not get it at my age). This was just a month ago. She put me on a beta blocker 400 mg. a day. She told me to keep hydrated and drink lots of gatorade. Also I must increase my salt intake. Things have definitely improved for me. I am now able to function most of the time. There are days like today when I get the wierd head feeling and need to lay down. At times I feel very disoriented and extremely fatigued. My heart checks out fine. Headaches have almost entirely disappeared (due to the beta blockers I am told). The point to all of this is that I think you should keep searching until you feel secure with your diagnosis. Just watch your wife carefully on the Keppra. It is a very powerful drug.

Let me know how it is going ---- Pat

[mjan]

{{{ HUGS TO YOU AND KRISTIN }}}}

Gosh I think YOU are amazing and hope you take all our support for yourself as well.

All I want to add it be careful of Keppra. Neuro docs love this stuff but it can cause more problems than its worth. They are making educated guesses at Kristin's expense.

I have found more help here than in all the years of docs and tests. Mostly they rule things out but are limited not only in evaluating but in prescribing. Docs like to know there is an RX to offer.

DIET and chemicals in food and drinks are adding to already messed up neurological system. Even so called healthy foods have hormones/chemicals added.

I see a specialized Nutritionist who has the most amazing evaluation tool It picks up what you are lacking or toxic from.. it assists with side effects from meds. It kept me going for a long time. Once I am done getting all my evals done this year I will go back. All my neuros were amazed at the improvement this guy was able to offer me.

I used to have autonomic seizures but they stopped.

Best to you and poor Kristin. Does she want to come on to this forum too?

Again.. I am so proud of you. Make sure to take time for yourself as well.

Warmly Jan

[Guest tearose]

npilotte8825,

If you call out to Mayo it will take longer than if her local physician calls. If she is not in crisis, they will see her asap which will be about 3-4 weeks. Be sure to insist on having the Neurology department be her starting point. Specify the ANS Neurologists. You don't want to start in Cardiology or somewhere else. Have her pcp request the ANS workup so Mayo can book some of these tests before she arrives there. The Mayo system is like nothing you have ever experienced. They will assign her a main doctor and he/she will oversee all her care and coordination of diagnostic needs while there. Once they start getting results back, further testing if needed will be ordered and other specialty consultations, if needed are ordered. In the span of one week she will see more doctors and have more tests and get more answers than you could in six months at home!!!

I believe you are on the right track. Hang in there.

best regards,

tearose

[yogini]

I think Mayo is a great place to go if you think you have something other than POTS. But be prepared that getting in can be a process - they don't accept everyone and it can be a long wait. You may want to read through some of the old posts on the topic.

I would also try to talk to any of the autonomic specialists in your area listed on the Dinet website. You will need them for ongoing care. I would try broth or something super salty instead of so much water. And has your wife tried compression hose or midodrine to bring up her BP?

[npilotte8825]

Hi Yogini,

Thanks for the feedback and the broth idea. She has tried compression hose and she is currently on midodrine as well as flourinef (and she was just taken off of pyridostigmine). The problem is that she seems to have a POTS flare up, but then some of her POTS type symptoms go away (the dizziness, the warning that she is going to pass out) and she just starts going unconscious with no warning whatsoever, regardless of position, etc. She can be walking and just fall down, or chewing and just fall off her chair. She has no idea it is coming and no idea what happened when she wakes up.

I think Mayo is a great place to go if you think you have something other than POTS. But be prepared that getting in can be a process - they don't accept everyone and it can be a long wait. You may want to read through some of the old posts on the topic.

I would also try to talk to any of the autonomic specialists in your area listed on the Dinet website. You will need them for ongoing care. I would try broth or something super salty instead of so much water. And has your wife tried compression hose or midodrine to bring up her BP?

[pat57]

Did they check her potassium level?

[potsgirl]

One more thing regarding Mayo Clinic in Rochester....I saw Dr. Brent Goodman, a neurologist specializing in ANS disorders, and since he had just transferred from the Scottsdale location (near me, darn it) it was a quicker process to get in to see him. He was great, and I think I had a two to three week wait. It really is a terrific system, and you can stay at hotels that are connected to the central buildings by underground walkway. I saw that Kari was kind enough to let you in on all the details. I hope you end up making the trip.

Good luck, and both of you take care!

Cheers,

Jana

[npilotte8825]

Hi Pat57,

they did check her potassium....along with all of her electrolyte levels a few different times.

Did they check her potassium level?

[arizona girl]

Do you know if they checked her for narcolepsy? As I was reading your post and the way she just goes out, it made me think it sounded like narcolepsy! Just a thought! Also did they rule out lyme's?

Yes go to mayo, Dr. Grubb is wonderful, but it sounds like she may need specialized testing which you are more likely to get at mayo. I would go to grubb after they figure it out and if treatment doesn't work, he is very good at figuring out how to treat. Also his wife has a brain tumor and at some point he might not be available to see patients. Her symptoms seem much more severe then just pots. I have a different form where my bp/hr only go up when I'm standing in talking, then once in a while I will have a drop attack, but that takes a trigger. Anyway a neurologist recently did a skin biopsy and it showed I have autoimmune autonomic neuropathy, that is most likely causing mine. I had a bunch of tests done, mayo specializes in testing for antibodies that can cause this, so make sure you get those tests. Dr. grubb put me on labetalol as it is an alpha/beta and after two weeks it seems to be helping, but he prescribed it specific to my symptoms. There are so many different conditions that can cause dysautonomia. As the doctor at UCLA told me, after my positive TTT, "You went Up, before you passed out?" Don't let them label you pots, you have not had a through work up, go to Mayo, you could even have a cancer causing this, or other hormones circulating in your body. So I kept pushing until I had most of the tests done to rule those things out.

Also please go and read all the stuff available on this site. read mechanisms, causes, etc and all the forms of dysautonomia listed here. Also read the pinned post titled "Frequently Asked Questions-help Yourself To Answers, Links to many sources of information" There is ton of info there too. I read all those and wrote down all the tests to be done that fit my symptoms. It made all the difference, because when my neurologist did an emg on me and it came back normal, I knew enough to say "well what about small fiber neuropathy?" that got me a referral to a local neurologist that does that testing. That is how I finally got diagnosed.

Keep the hope and keep going to you are satisfied with your results and treatment. It is wonderful that you care so much about your wife!

[janiedelite]

I also received excellent testing and diagnosis at Mayo after seeing a dozen local doctors who couldn't help me. My neurologist faxed the Neurology Dept at Mayo with a request for me to be evaluated for Autonomic problems, and he included a list of my symptoms. I received a phone call the next morning from Mayo with an appointment date about 8 weeks away. I wasn't actually terribly sick prior to my appointment date, but after flying for 8 hours and getting up early in the morning for the appointment I flared up quite severely. My symptoms definitely wax and wane somewhat also, which is rather common with autonomic issues.

If your referring physician can be detailed about the urgency of her health situation, maybe they can get her in more quickly. I was also seen by Dr. Fealey. We were there for 2 weeks undergoing testing to rule out any underlying disease that could cause dysautonomia, and to check on the severity of my neuropathy. It was so great to be seen by a doctor who really understands and who gave us some hope. When we left, we had a treatment plan that our local doc could implement and we were told I could come back if needed.

[snakeshoes]

Wow! If I didn't know any better, I'd swear you were telling my wife's story almost exactly. I'm sorry that you had to find your way here, but this is a very good place to be if you have to. My wife has gone through a lot of similar problems and difficulties with the medical system - everyone tells us how lucky we are to be in Boston with the best hospitals in the world, but they never seen to figure anything out.

I'm afraid I'm not going to be much help with looking for a diagnosis as we're currently lost in the same forest you are. However, I'd suggest pushing for MRI scans of her spine if they haven't yet and haven't found anything in the brain as some nasty things can be caused by problems in the spinal column.

As for medical specialists, my wife and I are waiting to get in to see Dr. Fischer who has a local reputation for being a guy who likes to figure out strange/difficult cases. His address is 830 Main Street, Melrose, MA. He's a neurologist and comes highly recommended. A quick Google search should give you his phone number as I don't have it handy here at work.

I can really sympathize with the difficulty of balancing all the issues of life as I'm going through the same thing right now. Feel free to PM me if you want to talk coping strategies for work, home, life, and everything or we could start a new topic here.

Best to both of you.

[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