ajw4790

Did your meds just change?

Hi all!

Sorry that I have not been around a lot recently. I tend to check in, but not post much. Welcome to all the new people on the board!

SO... I recently spent OVER a week at one of the major dysautonomia treatment/research facilities. AND it left me with more questions then answers...

It seems that they have made up their own diagnostic criteria for POTS etc. It is similar to the criteria posted on DINET, but with there own 2 cents thrown in. Have things changed??? Who has the final say in these matters???

Should the fact that you are on meds mean that you no longer fit POTS criteria??? I had over a 30 bpm increase on the TTT, but just under 120 bpm. SO, they would not call it POTS. This was my 4th and 5th TTT and the three previous demonstrated POTS as a diagnosis without question. Just because my meds do work to keep my HR down should not mean that I no longer fit POTS criteria. They did not request that I be off of meds. My BP crashed during one to 50 something systolic to 30 something dystolic., but the drs. did not call it NCS, but a simple faint. I did not lose consciousness, but evidently I fainted...

So, according to them it demonstrated orthostatic intolerance due to deconditioning and part of a vicious cycle that starts with genetics. Two other dysautonomia specialist have agreed on the POTS diagnosis. Also, the recent drs. claim their tests did not show enough evidence to diagnose small fiber neuropathy, although the other drs. diagnosed it, and at least three tests were positive for SFN. AND it was what helped to explain much of my symptoms. Without it I do not make a whole lot of sense...

I just don't know.... more questions. NO answers. Way to much money and time wasted. URRRGGHHH!

What to do???

Hi all!

As it is tax time again, I was remembering some comments others had made before about possible deductions for things that we tend to use due to our disability. One that I remember is being able to use air conditioning utility bills as a deduction, because we require it more frequently and a higher amount than people without dysautonomia.

What other things can be used as deductions when preparing one's taxes for those with a disability?

I hope this can help others as well.

Thanks!!!

Hi!

Thanks for the help! I am still frustrated at the moment over just about everything medical related. It seems that I have hit another one of those walls of frustration over insurance, financial, legal, pharmacy, referrals, and doctor related issues. Urrgghh!!! So, this just is adding more to an already "happy" situation...

I have left a message with the PCP's office, and have tried to get an appointment in earlier than was scheduled to discuss this and how I have been feeling. It started before all of this extra "fun" stuff, and just makes everything that much "easier"!

I have been exhausted like when you have the flu, and not so much like meds or orthostatic stress exhaustion. I only last 4 hours and I crash. My mood is wacky too. I feel like I have had more bp issues. My brain is just awful, it isn't foggy, it is like a melting pile of goo, and I have had so much of an issue remembering and communicating thoughts to others. Slurring my words etc. I am nauseous some. I have had the same semi-odd migraine for like a week on and off. My body is more sore and painful all over. All in all it seems like some kind of weird flair, that does not cooperate well with stress. What's new, right?

I have been wondering and concerned over the possibility of Serotonin Syndrome??? Anyone experience it, or know more about it than the Wikipedia/Mayo definition? I feel it is hard to tell much, because so many of the symptoms are ones that we experience all the time... Any insight???

Thanks!!!!

Hi,

How am I supposed to know what and how to go off medications prior to going to Mayo???

I called, but they won't tell me or forward me to anyone that can tell me. I do not want to have to go back later to get anywhere. I am a new patient to my PCP and do not have a neurologist to call either. I do not think my PCP will feel comfortable enough to pick and choose what meds to do what with.

So, how did those who have ventured to Mayo before me find out what to wean off of etc??? Who do I need to talk to?

I am so frustrated right now. I do not understand why I can not just get a straight answer and not a bunch of lines and excuses. I do not want to go up there and have the dr. expect me to be off meds and I am not. I don't want to have to return to get any answers.

What am I supposed to do???

I have been feeling like crap, and did not have the energy to deal with this today.

Please give me any help or ideas you may have.

Thanks!

Hi,

I am 25 and have had both issues I guess. But, I have just noticed the occasional thin silvery short hair along the part of my hair. I always figured it was most likely due to all the meds. As far as loosing a ton of hair, I always have. Mine is worse when my iron stores get lower. Anyone that has this issue to get their ferretin level tested. It took drs. forever to test mine. It is so often overlooked, but is very important. Where we already have problems with having enough oxygenated blood flowing through our bodies I think this is just part of what tends to happen.

But, yes, I do believe they can be common symptoms or side effects of everything that our bodies are going through.

YAY! I am glad it went well, and that you are finding out more pieces of the puzzle. The test you mentioned is often referred to as a QSART test. You can find more info on it on the DINET website and probably through google. It isn't too bad of a test. It measures your sweat response through electrodes on your skin. The worst is a bee stinging/zapping sensation at the electrodes as they do their thing. Otherwise the worst was laying still for the 30 min or whatever.

Hope that things continue to go well on your quest for answers!

Hi everyone,

I was wondering what you guys know about household bleach causing worse than normal symptoms? I have done a google search, but did not find a whole lot that doesn't require one to have ingested it, which I didn't...

Long story short... I live at home with parents and mother has decided to use bleach now on a daily basis on dishes, in sink, etc. after father complained of dirty coffee cups... So, bleach water has been a common smell in the kitchen. I have always been super sensitive to bleach. I can detect its use hours later in another part of the house without anyone saying it had been used. It is worse if more is used, and for a longer time period.

Currently she is using relatively little, but it sits around in the sink all day. I always can smell it, and if it were just the smell it wouldn't bother me so much. But, starting a bit on Christmas day and everyday since I have been super fatigued (as in can not sit upright after 8 hours of being awake), very nauseous (without feeling of acid reflux-unusual for me), and a headache that progresses to a migraine. I had noticed the use of bleach right away, and noticed it on a daily basis, but when I mention things like that that may be causing symptoms, I am told it is such a little amount etc. This type of thing is a very sore subject, and if I pursue it, she is likely to get quite defensive etc. I already mentioned it in passing and how it correlated with my increase in symptoms, but it did not stick.

I know something is going on because it is so different than "normal" crazy me. I mean I feel like people describe when they are pregnant. Which I know is not the issue here... But, the thought of foods, seeing foods, smelling foods etc. all makes me nauseous and go on to a migraine. I couldn't come down for Christmas dinner, because the garlic smell was outrageously awful. I had a migraine and nausea that I just had to sleep off. And I never ventured out of my room, I could smell it so bad from upstairs.

So, my questions are... Does this sound familiar to anything you have experienced? Do you think it is the bleach or something else? What is this called? How do I remedy it?

Also, it is probably important to note that the heat has been on more and increasing my "normal" symptoms, and I am feeling better as I back the heat off. But, I am still experiencing the above symptoms when around the bleach. But, I think the excessive heat had really not been helping any.

Speaking of the heat- How do you brave the heat of the house and dry air, when there are others that are really cold and need the heat????

Thanks y'all!!!

Hi all!

Thanks so much for all your responses. It means and helps a lot that there are others out there that understand this, and that you all offered your thoughts and suggestions. I am also happy that many of you thought it was an important topic, and one that you could identify with as well. As you guys know, sometimes you can feel alone with some of these thoughts or feelings, and feel that it is just you, and something that you just have to get over and deal with. It is just not always that easy to do.

As far as my situation my sibling and there significant other have cut me off from communication previous to learning the cancer diagnosis. So, all in all we do not talk. It is not the way I wish it, and I have tried repeatedly to work on our relationship, but others are not so up to working out our differences. But, they talk to my parents, and since I live with my parents. I do kind of get the vibe, picture, comments etc. from them about the situation. My parents all in all are understanding, but you can tell sometimes that they struggle with why someone with cancer can be so functional yet I can not.

Even though I was told not to email my sibling anymore, I have wrote two short messages to them. I was very nice, and tried to say that I could not imagine what all they are having to go through, and for them to take care of themselves. Wished them the best, and told them that I was happy that it was caught early, and that it sounds like they are getting good medical care. Also, told them that we were here to help them if they needed it and to call us if needed. So, I have tried to be very civil, offer assistance, sending best wishes, and express my concern of their health (but not act like it is a death sentence- as someone pointed out as a choice to go, but rather that I was optimistic about the medical care they have gotten).

I do agree that a terminal and a chronic illness are two very different things, but yet can be very hard to differentiate in real life. I would like for my sibling and spouse to at sometime watch the dvd etc., but they are very not open to any of this, and I do not believe they would come away with the intended message of the dvd. Especially if I gave it to them at this time, where they are both dealing with the cancer treatments etc.

Thank you everyone for all your thoughts and input! It helps so much to hear that others deal with this as well, and that there is a way to separate the two very different conditions.

Thanks!!!

Hi,

I am in Springfield. Recently moved too, and not sure how far that is from here. There is also someone in Champaign and southern Illinois that I know of on the board.

Hi,

Is she taking any medication? What other treatment methods are you/have you tried?

Hi all,

Not sure my title really portrays what I am wondering? Wasn't sure how to word my question. But, recently someone that married into my immediate family (sorry, trying to be a little vague for their privacy etc.) has been diagnosed with cancer. Thankfully it was found early, removed, and they are undergoing radiation treatments. Thankfully, testing showed that it had not spread. So, although cancer is a very awful unimaginable thing to go through, it seems at least that due to early detection etc. it is just about the "best" case possible (if there is such a thing).

So, although this person is not related by blood, they are part of the family, and means a lot to someone in my family, I care greatly that they get the best treatment and are in remission soon. My point is they are not blood, but I realize they may as well be. And that this bond forms thoughts, feelings, emotions, etc. from my other family members. My parents overall are understanding of me and my medical issues, but as it turns out my sibling and significant other that have been affected by this have not been understanding at all of me and my medical issues. Before when one of them had scoliosis surgery, they were very much to understanding to me, and thought of it as the surgery was the only actual medical issue. So, this is not the first thing to come up between us, and add to the animosity. Also, it may help to add that my sibling and I do not get along at all for whatever reason, so this really just adds to an already uncomfortable situation.

My question is how do I deal with things between my parents and I, as well as my sibling/significant other and I?

I totally 100% understand that cancer is an entirely different animal of medical issues. Biggest difference being mortality, an so many other things that come along with it. Remission, checkups, fear of reoccurrence, side effects of treatment etc.

But, I can feel the animosity, glaring looks, etc. as to why this person with CANCER can still work, but I can not. And why they can still do so many other things, but I need help. And the attitude of well, they have cancer, how dare you express any medical issue, because that is nothing.

Does that make any sense?

How do you deal with people in your life that also have serious medical issues themselves. I don't want to minimize what they are going through at all. I am just not sure how to make it clear to others that they are two different circumstances, and that everyone has their own abilities/disabilities????

Any input? Hope I made at least some sense. If you or someone close to you has had cancer I hope you do not get offended by anything I said. I do not think my experiences are equal or worse than cancer, they are entirely different from cancer.

Thanks!

Not about Tumeric, but I thought it was funny how many of us are "fast walkers". It makes sense and everything. I just hadn't put it totally together. I am a fast walker (normally, but not when symptomatic) and an impatient one. I can not stand walking at a slow pace behind people, or walking slowly with someone that has only one speed... slow. I can not stand still in stores, I always have to be walking. I am not a lingerer. It can annoy others to shop with me, and can annoy me as well!

Me again!!!

I too think that a Facebook group or email may be better. That way we can share between each other, and if find someone on similar level as you it is easier to communicate one on one vs. only the entire group. If it was on Facebook, it could be a closed group so not just anyone could view, add stuff etc... Just a thought.

PMing on here can fill up quick when used like that....

Hiya all,

I haven't been on the board much recently, but I saw this and I like the idea. I am not sure how good I will be, but I do need more exercise. And to lose weight. My main exercise would probably be on my little exercise bike (the kind with just pedals you can use from any chair). Probably stretching too, and after a while try to add in more resistance training. I need to increase my endurance... So, let me know what you all come up with as far as forming a group!

Hiya,

I wanted to remind again to those that find D3 makes them feel worse, that it is derived from sheep wool (lanolin). So, if you have an allergy to this, this maybe the cause. A lot of people seem to be sensitive to it. Try D2 instead and see if that makes you less symptomatic.

Hiya,

I was curious to if he is currently taking or eating a lot of anything herbal etc??? Like Turmeric? Garlic etc??? Man, my dad has had some serious sweaty smelly issues with the "voodoo" (as my mom calls it) that he ingests. Ayruveda (sp) stuff, lots of hummus and other garlicky food.

Anything like this with the mattress, and him being a teenage boy could explain a lot of it.

I recently bought myself for Christmas pillows that are supposed to continuously stay cool through out the night. maybe something like this would be helpful (it is supposed absorb the body heat).

Sounds like quite the stinky situation!

Hi,

I also wanted to add to make sure and start on new med at a time. Give the first a couple weeks and then try another. Otherwise you won't know which is causing what positive or negative effects that you are experiencing. I tried Florinef, but it wasn't for me... I had opposite the desired reaction for whatever reason. But, I wouldn't have known had I not tried it. I think that it is good to be open to trying some of these meds or drs get frustrated with treatment. There are only so many things that are thought to be of help with POTS, and if drs feel you are not open to trying any of them they are less likely to be very helpful along the way. One of the most important things is making sure to have a dr. that understands what they are prescribing, how to correctly prescribe it, and how to adjust it as time goes on.

Hope that the BB trial goes well.

In reply more to the first post (Kayjay), I thought I would throw my 2 cents in, and say that it sounds like most could fit with iron deficient anemia. To test this the drs. need to look at your ferritin level and not just hemoglobin and hematocrit. My hair loss greatly increases as my iron decreases. I think I am getting to the point that I can feel it. You can also be cold sensitive, very fatigued, muscle twitches, pain, really so many things can be affected. The fact that you have endometriosis and heavy bleeding makes it seem even more likely.

My mom has recently had a lot of heavy bleeding, and I had told her she needs to get her iron checked. Within a week of that conversation she was complaining that her hair was falling out like mine, and hers never does that. Again I told her it is probably the iron.

I ignored what my body was telling me for a long time, because my drs. never checked it. I ate ice like it was all going to melt, I craved ice cream and everything dairy. I craved (painfully) cereal- I have NEVER ate cereal in my life. I hate the stuff! I started buying other random things like cream of wheat, to only find out it is high in iron. My mom thought I was nuts on many occasions due to what I was now eating, and I had no real explanation to why it occurred until the ferritin test. I also ate a lot of almonds and randomly started eating hummus. I had days when it was super low that I craved a hamburger so bad, and again it was like a painful knawing feeling, that my body would not let me ignore. I got more cranky and symptomatic the longer it went. It is really weird until you start to understand what is going on.

So, this is just an idea, but not necessarily the answer to everyone. But, it is always worth looking into, because it is a simple blood test.

Sorry to hear that you have another diagnosis to add to the list! But, I am glad that you got some answers for your symptoms, and that there are treatments to try and decrease your symptoms. If this becomes more under control then maybe you will feel less POTSy, which is a good thing!

I hope that this continues to lead to answers, treatment, and healing for you!

Hi,

I started Topamax last Thursday and have had bothersome side effects from the beginning. What's new right? I got the spacy/giddy/high feeling and made everything look like cotton candy clouds for the first four days or so, but that at least is getting better. I also have felt nauseous, and it has affected my appetite, and sense of taste and smell. These I am dealing with, but they are getting old.

At least for the most part I have been able to sleep on this med, because most cause me to have insomnia. I also have had a LOT more pounding rapid heart rate especially right after taking it and with any physical activity. So, not to POTS friendly- which I thought it was supposed to be...

I also have had this painful dry and sometimes blurry eyes. It has been obnoxious! Today it did get better though, so possibly this is one of the side effects that will gradually go away.

But. the WORST has been then headache/MIGRAINE, which is one of the main things that it was prescribed for. I know it is the medication, because they are slightly different than my regular migraines. They are weird, annoying, painful, and occur most of the day. It is weird that it is causing migraines, when it is supposed to treat them... BUT, that is the story of my life...

Has anyone else had a similar experience on Topamax? Has any one found it that helpful? As in, should I work through the side effects longer to see what happens? So far I see no positive effects.

Any ideas? Any experience???

I wouldn't really worry about upsetting them either. Give the drs office enough time to respond, and if they don't respond in a timely manner it only makes sense to follow up and see what is going on. Like you said they may not have all the necessary information etc. or the nurse or person that returns these calls may be out sick or something. More than likely though they just are not getting through their calls etc. very effectively... It makes sense to have both a neuro and cardio if both systems are affected. The key like firewatcher said is making sure that one of the drs is your main or "go to" dr, so there is someone to coordinate things.

My recent fun trying to get assistance with a drs office has also been eventful. For whatever reason my PCP's nurse keeps having people filling in for her, which means she has not been keeping up with everything or returning calls in a timely manner. I have been waiting on info for like three weeks, and made multiple calls. Yesterday I talked to one of the nurses fill-ins, and of course she didn't know anything, but I told her to get me on the call list for today. Also, I told her to have the dr. call me, because I knew some of it was up to him. I have only seen him once, but I figured from the type of dr I pegged him as that he would call me. Amazingly, after calling mid-morning he called me early afternoon! I have had very few drs like this, but figured if I have one I need to try to get him to help out with things. A lot of my issue is that I moved and he is my new PCP, and his staff has yet to get to know me. And my chart evidently doesn't represent me well yet! The staff seems to still think I am the run of the mill twenty something. I wanted an appointment to see an ophthalmologist, and they sent me to an optometrist! If I wanted a regular eye exam I would just walk in somewhere or make my own appointment, why would I have my dr. make it???? Then it took 20 minutes and three people talking down to me and like I was crazy to get them to understand I wanted to see an MD, not just get an eye exam. The dr office didn't actually send a referral either... So, I discussed this with the dr. and will discuss with the nurse that we need to make sure that they realize I am requiring specific medical treatment, and not just average treatment. It can be SO frustrating, and like beating a dead horse to get anything across to medical staff if they are not willing to open their eyes or listen.

So, my long winded point is that miscommunication and lack of follow up is not uncommon, but it means that we have to be our own advocate and if they don't respond in a timely manner follow up. Ask them what is keeping things to see what can be done about it. Do you think talking to the dr. would help. Sometimes the nursing or clerical staff just doesn't understand, and needs some help understanding the situation. Also, with everyone getting sick this time of year, I think it just slows things down because the nurses etc. get sick too, and then they get behind.

Call them and see what is going on. Explain again what you are looking for and why. And do anything that might make it easier, like if they need a phone or fax number that you have or can find give that to them. Then they have fewer excuses to not do what they need to do.

I hope that helps and that you here from them today!

Thanks for you reply! Yes, I do still have my gallbladder, and had been wondering about it, and figuring it will likely come out some time. Most of my drs. of not shown any interest in it or liklihood of it causing any of my symptoms before. With having had my appendix out and my mom having her gallblader removed I have pretty much always figured that my gallbladder would come out sooner or later. I am waiting to see how things go the next couple of days, and see dr. if things pick up again.

I did forget to say that I am one of the people that fall into the category of being told by a dys. specialist that the neuropathy likely has an autoimmune component. But, it did not change anything, because everything is so new, that there has been so little testing.

Congrats on finding what worked for you! I hope that it continues to be the answer for you!