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Posts posted by npilotte8825

  1. My wife has hypothyroid (Hashimoto's) and is on Florinef for her POTS as well. She has not had any real problems being on the medicine however we have noticed recently that her BP is actually a little bit high at times. This has never NEVER been the case for her before and she only recently began taking Florinef (the beginning of August). I don't know if the Florinef is the cause of her increased BP (that is what it is supposed to do after all), but now sometimes her BP is as high as nearly 140/90. Not sure if this helps any but I thought I'd try

    Hello all,

    I'm about to start Florinef, and I was reading through all the information, and it keeps saying "tell your doctor if you have hypothyroid disease." I do have hypothyroid disease, but my doctor already knew this when he prescribed Florinef. From what I read, it sounds like being hypothyroid can sometimes make a low dose of Florinef have a stronger effect.

    Do any of you who have POTS and hypothyroid know anything about this?

  2. Hi again everyone,

    First I would like to thank everyone who took the time to read and/or respond to my previous topic "Kristen's disaster! Please help". All of your advise, thoughts and prayers were/are much appreciated. I have one new question to ask of everyone. Kristen's doctors (more or less by process of elimination) are now suggesting that she have the cyst on her pineal gland drained. The cyst is rather large (about 12 mm by 9.5 mm) and it is pushing on the corpus callosum in her brain. The doctors are now saying that it could explain her headaches and possibly even the seizure-like "episodes" that she continues to have. Has anyone out there had a pineal cyst drained? I know that there is a lot of contradictory information on the web. Some info claims that the cysts do nothing while other things that I have read indicate that large cysts on the pineal (such as Kristen's) can cause some of her symptoms. The doctors have looked to see if the cyst seems to be effecting the flow of cerebral spinal fluid and have not been able to give a definite answer one way or the other. We are going to another neurosurgeon next Wed (we have already been to Beth Israel in Boston and will now try Mass General in Boston) to get a second opinion before deciding, but as we are still waiting to hear back about getting into the Mayo Clinic (who knows when) and since this is the only thing currently on the table that has any hope of making her better, we are thinking it may be worth a try. I have read that pineal surgery can be risky but the doctor as Beth Israel claims draining the cyst is actually a very low risk procedure as far as any type of brain surgery goes (turns out he just so happens to be a pineal surgery specialist). Any thoughts? Thanks again so very much.....I can't tell you how much Kristen and I appreciate the help and advise.

    Nils (Kristen's husband)

  3. 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?

  4. 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.
  5. 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.


  6. 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-


  7. Hi Dustin,

    I just actually posted my wife Kristen's story. She has some of the same problems that you seem to be suffering from. She does not have the uncontrollable crying, but she has had tremmors / shaking which sound like your head movements and they also happen while she is awake, asleep, or out due to an "episode". She was on beta blockers for POTS as well and they did not work for her either. She seems to have more actual "episodes" in terms of actually becoming unconscious than you do, but a lot of the symptoms seem similar. Unfortunately, I don't think I can give you much in the way of answers since Kristen is currently in the hospital for the third time this summer and the doctors can't seem to figure her out. If they do give us any useful info, I'll be sure to pass it on.

    Hang in there

  8. 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.


    Kristen's concerned husband.

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